The Mercy Seat

Search, Search, Survive.

2010-06-05T10:57:00.001+01:00

Martin from the fantastic Number Two's UC blog received a message from a graduate student at University of Washington School of Nursing who is working on a thesis entitled: “Assessing Patient Attitudes Towards Using Information and Communication Tools to Report Inflammatory Bowel Disease Flare-Related Signs and Symptoms”, the overall goal of which is to understand how IBD patients currently monitor and manage their conditions and how they perceive technology could be utilized to facilitate communication with their health care providers.

Unfortunately Martin is unable to post on Number Two's at the moment, so he asked me if I would post the information here. So, read the information below and then, if you would like to contribute, follow the link below. Which just leaves me to say: i) how do people come up with these titles for their theses?! and ii) thanks very much.

The following 30-question survey should take approximately 5-10 minutes to complete. Your responses are completely anonymous. The survey asks questions about your IBD symptoms, how you monitor and manage your IBD and how you would like to be able to interact and obtain feedback from your healthcare provider. Your anonymous feedback will be used to better understand how IBD patients monitor and manage their flares and to assess if technology could be used to enhance this process. Advancements in technology have increased the options that patients have for monitoring and managing other chronic conditions. And hopefully, the information gathered from this survey will eventually lead to the creation of technology that could be used to enhance patients’ abilities to monitor and manage IBD.

Only participants 18 years and older are asked to complete this survey. Thank you for your participation.

For additional rights about your rights as a participant in this study, please fell free to contact the University of Washington Institutional Review Board Office at hsdinfo@u.washington.edu or via phone at (206) 543-0098.

Inflammatory Bowel Disease Patient Survey

Blue eyes cryin' in the rain

2010-05-20T23:21:00.000+01:00

16 packed days since my last post, during which I have not updated because any amount of writing served to remind me that I was imminently delivering another speech at the Record of Achievement ceremony. I won't bore with the details (I wrote about it last year, see here), but suffice to say I was expected to deliver a speech to 300 students and their parents, so about 600 people in total, to recognise the end of school before they embark on the final push toward their exams. Due to my own stupid ideals, rather than produce something short and heartfelt like most of the other staff speaking, I have the need to appear 'funny'. And thus create a whole new level of stress for myself. So, any contact with a keyboard sparked a churn in my guts as the fire of public-speaking-fear was ignited. Like being back at school myself: stressed because I know I've got to do something, but too stressed to do something about it because that would mean facing up to the thing that was causing me stress and acknowledging that I hadn't done anything about it, and so inducing further, dangerously repressed, stress... Anyway, I did it on Tuesday, with only two preceeding toilet visits, and no bowel evacuations on the stage. Which is, of course, nice.

Despite all this piffle I have been staying in touch with the UC blogosphere. And in particular was provoked into thought by this post on the The Knife you See, and a comment a friend made to me about how far down the 'chronic illness' road I have travelled. At the start we have questions, many questions, and duly recieve answers. Answers that I think we believe. In time the answers don't seem to hold up. May be they stop working. Maybe new questions render them redundant. So, next come the questions that cannot be answered so readily. These questions begin to give us an insight to the methods of finding answers to our original questions. We find that the answers to our new questions are unobtainable or subject to new leaps of faith. A crisis of confidence occurs. If this were a religion we might be doubting our god. We are forced to find a new framework within which we can restore belief. I stopped asking questions and started to look for the answers myself. First from without, and finally within.

I still do not understand why my UC causes massive inflammation in my limbs. I have been told unequivocally by a rhuematology professor that this is the case. At the time when the gastro docs were assuring me the only stone left to turn had a stoma under it, the rheumy prof pretty much told me that was the only course of action. I had made a big fuss for a second opinion through which I had been referred to his care. He basically kicked me into the long grass. I was damn sure they were wrong then. I still am.

I am not anti-surgery. I am not anti-drugs. I have not lost all faith in western medicine. What I am is sure that this disease is so variable and varying that we have to break out of the regimented methods of dealing with it. So many people I know have had to take exactly the same journey: 5ASA's, preds, azathioprine, 6MP, Methatrexate, Infliximab... surgery? Colostomy? Ileostomy? Perhaps peppered with alternatives along the way. But look at the blogs. People finding success, and indeed failure, with so many combinations of approach. But different. Different. Different.

I was trying to find a way to express all this when I stumbled upon this in an interview with the venerable old Willie Nelson:

"I think everyone has to decide for themselves. I think there's a scripture in the Bible [Luke 4:23] that says: "Physician, heal thyself". I think we all have to look at ourselves and say OK, I think this would be good for me, or I don't think this would be good for me..."

As it happens he was talking about marijuana! But I like the sentiment.

Feats don't fail me now!

2010-05-04T17:23:00.000+01:00

I passed 6 months drug free last week, sunday to be exact. I left it unmentioned; the first monthly increase passed without comment. And then BANG: this...

It started wednesday. I went up to London in the evening to a gig with a good friend of mine who lives up there. An entertaining evening was had, but on the last train back to Brighton somewhere in my head a little voice could be heard... "there's a familiar old pain in your left shin richie... don't ignore it...". And so began, for the first time in a while, that feverish compulsion to keep rubbing my leg. Brilliant. It's nearly midnight, I'm stuck in a packed carriage and I cannot stop myself repeatedly pulling up my trouser leg and rubbing the offending area... Still I wouldn't need to fight for a seat: who wants to share space with a leg rubbing loony?

By morning there were two inflamed areas on my left leg - not massive - and a small area on the top of my left foot. By the time I got home from school (after parents evening) both feet were massive and my school boots could empathise with the footwear of the Hulk. I was in agony, not helped by having to repeatedly stand to greet each new set of parents. Not happy. By friday they looked as they do in the photo - I went to school (too much GCSE Controlled Assessment to miss a day) but in my unlaced converse, doing the 'old-man shuffle' round the place.

So, this has raised several questions: 1) Whyohwhyohwhyohwhy? 2) What do I do now? 3) What if...?

1) Why? What was the trigger?

football injury - on sunday the 25th April I played football. In the last 10 minutes I had a fairly bone-jangling collision with a defender (totally fair: we were both running for the same high ball, looking up at it rather than at each other... BANG!) in which I suffered a bloody painful 'dead' leg (I've just read that link myself - bloody hell, it sounds much worse than I've ever thought!), that caused me to sit out the end of the game and limp for at least 3 days. I know these facts and the info in that link are somewhat damning but... it was in my right leg.
stress - could be that I've let my old nemesis sneak up on me again. I am always guilty of subconciously burying stress, even in these mentally enlightened times: we are getting to exam-end of business at school after all. And as everyone in the English education system knows, if those kids don't meet their (inflated-for-challenge) target grades, there's only one person to blame... me.
I've had a cold - feeble, but true... I'm not milking it. It's not Man-Flu. It's just a cold. Annoying nonetheless.
sloppy regime - no, I'm not talking about my bottom here..., but the fact I have become extremely blase in using the NLP and Hypnotherapy tapes. Why? Coz I've been well and lovely of course! Come on, when everything in the garden is rosy good intentions are so easily loosed for something more interesting. I reckon it had been nearly a month since I'd listened to either of them. I have to admit I was guilty of slipping back into some of my bad habits too: the ranting had restarted (at the TV mainly, several key-characters in the imminent general election, the infamous 'bird' incident described last post...), the grumpiness had resurfaced, the general pessimism was alive again... Mmmm.
A combination of all of the above?
The UC is waking up?? Not contemplating this one yet.

2) What now? Well, at first I thought I'd have to get back to the rheumatologist, but since they discharged me in what I see as a joint-dept conspiracy to get me onto azathioprine, which I was refusing at the time (AND QUITE RIGHTLY TOO I MAY ADD. Bastards) ("your arthritic issues will only improve if you deal with your bowel symptoms", "But what if they're not related?", "They are", "How do you know?", "They are", "Yes, but how do you know?, "They are"...), but that would involve getting a new referral from my GP. But then I thought: Bollocks, just get back on the tapes Rich, this is just a blip. There have been so many conventional medicines that I have kept up despite much worse in the way of symptoms or side-effects (Aza, Asacol, Salazopyrin, 6MP, Pentasa, etc), always thinking (and, indeed, often being told) that problems would be ridden out. Well, maybe this NLP stuff isn't going to be a totally smooth ride, but I can't bin it yet. Not after my healthiest 6 months for nearly 7 years. So, I've hit the tapes hard...

3) What if... my bowel symptoms remained negligible at the expense of an arthritic flare-up every 4 to 6 months? Would I take that? Well, it's been 5 full days since the first signs of the arthritis and the swelling has gone, though the feet remain sore... so... say, you're offering 5 - 10 days of pain and hobbling for no bowel symptoms... I'd bite your fucking hand off.

Finally, Lovely-wife chastises me for photographing my various swellings (of the UC variety!). "It's for the blog" is my standard retort. But she knows me better than that. I have shown that picture to at least 8 of my colleagues and friends today... They're interested! Of course they are. And I'm just doing my bit for UC-education.

I must put a picture of my normal feet on here at some point though.

The Real Me

2010-04-22T18:45:00.001+01:00

When all is going well, sometimes you need to test the UC. Of course, that is a complete load of old cobblers, but it is true that sometimes something happens to test it for you. For me these tests usually come in the guise of a stressful situation or through the consumption of ill-advised food (because I only have so much willpower,and most of that is reserved for staying on the wagon...). Well, last week my current low-level UC status was scrutinized by an evening in which those two challengers came at me in a pincer movement...

The other evening my mates and I finally managed to schedule a mutually convenient evening for a curry. Now, I have blogged about my miraculous relationship with curry before. For all the things that the UC has stopped me from eating I have always expected to have my appetite for curry and all things indian curtailed most completely. However, despite the Devil owning all the best food as well as the best tunes (Lord knows what heaven must be like...), somebody somewhere decided to shine a small chink of light into my life, and allow me to consume the odd curry. As long as I don't go mad spicey-wise. So a curry with the lads is hunky-dory and a reservation was made.

On reflection, I should have had an inkling from the name... we booked a table at The Chilli Pickle. The menu arrived with, what I think the restaurant describes as 'authentic' (as opposed the UK-indian fare we might get from a standard indian takeaway/restaurant) dishes listed, and at the end of each dish description was a little row of chilli's to indicate the 'heat'of the dish. Obviously (although I hadn't given it much thought until then) pretty much all the dishes were racking up the little chilli's at the end - this was their ethos: everything with fresh chilli. I plumped for something '2 chillis' strong, the lowest available strength, and said a quiet little prayer for my bottom.

My 'bottom-prayer' was prudent, because at this point it had already been tested by a stressful situation of the utmost weirdness - the kind that only seems to happen to me...

My journey into Brighton to the Chilli Pickle had to be undertaken on my scooter, not an awful proposition now the weather is finally picking up: it is always pleasant to scoot along the Brighton seafront in the sunshine visualising myself as Jimmy in Quadrophenia (see below). The restaurant is located in Brighton's Lanes, so as I was on the bike I would be able to park pretty close. However, this being my first visit to this place, I was not certain which Lane I wanted to turn up. On approach to the first I indicated left (didn't slow because there was a steady slow flow of traffic) but then changed my mind - I'd go up the next one - so I stopped indicating and continued (no movement or change of pace). The car behind started tooting at me...

Now, it could have had something to do with having been worn down by thoughtless car drivers over the years, or it could have been a steroid-flashback, but inexplicably I gave 'em the bird (dangerous in my line of work, consider parents evening: "Have we met before...? Oh, yes, at that junction... Anyway, about your son's geography..."). As I rounded the next corner, the car behind shot past me, cut across the road in front of me and screeched to a halt. I came to a rapid stop, and sat astride the bike. The car door flew open and an extremely large and irate youth stormed toward me. I do not exaggerate when I describe him as LARGE. His mate got out the other side. Ahhh...

Next thing, he's thrusting his own raised middle digit right in my face:
"You man enuff to do dis in ma face man? You man enuff to dis this in ma face?"
Oh, do love that peculiar london patois the youngsters converse in these days. Especially when it's shouted in my face...
"Ah you man enuff? Huh? Like dis? Huh?"
Well, it seemed to me the only obvious answer was the truth:
"No. No, not at all. I'm really rather sorry actually..."
Which rather seemed to throw him:
"You was showin' ya blinkers..."
He said, which threw me - my 'blinkers'? What is he talking about? Oh, he means my indicator...
"Yeah, I changed my mind, sorry..."
"You was showin' yer blinkers... ya blinkers was on man!"
And at this point he started to punch the front of my scooter. PUNCH THE FRONT OF MY SCOOTER! Repeatedly. And repeating the word 'Blinkers'. I would have got off and run away, indeed I was desperately thinking about how quickly I could lay down the bike without damaging it, I was certain he wasn't going to let me put it on its stand before he started punching me. Thank god I was wearing my helmet... But he didn't. Once he had punched the bike several times, he stomped back to his car and drove off. Of course I then had to follow him round the one-way system for several hundred metres!

So, a curry on top of metaphorically shitting myself. Good combo. But the food was good. And the company excellent. And guess what? Next day no ill effect. In fact, since then I've been constipated! Go figure.

The Look of Love

2010-04-13T13:48:00.002+01:00

Hey! No counting. (But it's over 5 and a half months... )

I was in the pub the other night with friends of 25plus years. These are the kind of absolutely rock-solid, dependable mates with whom one can share all ones UC tales. In gruesome detail. These are the friends who never question my sobriety despite all those years we spent on drunken adventures and high jinx. These fella's have helped me through many a desolate period, visited me in hospital, are the only people allowed to laugh when I've shat myself... So, we were enjoying a few beers/cokes/non-alcohol beers when discussion turned to when we would next go out for a curry. We had been planning on a curry-night the week before, but were thwarted by a bout of D&V to one of our company - and this lead to a poo-themed exchange. The scenario put forward was one in which the toilet, and your poo specifically, becomes the focus of your day... of course very quickly it was established that this is my area of expertise...

The toilet-centrality of the UC sufferers life goes without saying - there are those times when the bathroom is virtually your prison. Thankfully I have been free of that for sometime now. But there are other areas of poo-centricity that I seemingly may never change. I have oft made mention of the Bristol Stool Chart, (my friends have become entirely au fait in its application - we like to recount poo-types currently being experienced... (uh, is that wierd? No, don't answer that)), and of course to the UC-er poo consistency becomes an obsession. Not only are we asked about it at every gastro appointment, but it lends itself to our own peace of mind: my entire mood can be determined by the consistency of my last toilet visit - should you ever meet me with the expression of a well-contented man on my face, be sure that I have probably deposited a sausage somewhere earlier in the day. I'm not sure exactly what's best on the chart, but I like to aim for a Type 4, although, I'll be honest I'll cheerfully greet a Type 3 on its arrival.

Thus it is that I/we spend considerably more time than most staring into the toilet bowl: 'Are they soft blobs with clear-cut edges, or fluffy? Is that a mushy stool?'. This is no place for the squeamish, and I'll be frank, I have often found myself trying to move things around that pool with nothing more rigid than twisted up bog-roll. Oh, bugger it, I'll admit it, on occasion I have been known to use a cotton bud (the most conveniently located tool)... It's not pretty, but it becomes vital: this can determine what I do and where I go. Or even whether I do anything, whether I'm going to leave the house, or whether I take spare stuff in case. I have ruined potentially enjoyable trips by worrying all day after a toilet inspection. I have turned down the chance to do great things. I have sat at home wallowing in misery. All because I've dwelt on the contents of the toilet bowl. (As an aside: I wonder if you can 'read' those contents? You know, like the tea leaves...).

I'll never stop looking into that bowl, but I'm better able to shake the mental torment planted by the poo lurking there. This has free'd me up to enjoy life better. This weekend past was a case in point. On sunday I travelled with a band of fellow Portsmouth FC fans, up to the FA Cup semi-final. In the negative ways of old, a day spent, essentially, in packed trains and a football stadium (albeit Wembley) would fill me with fear - and of course, for the UC-er, fear brings...consequences. Indeed, in the utterly complex recent history of Pompey that I shan't bore you with here, only two years ago we also reached the cup final. I attended with the same intrepid band of fans, only this time armed with 2 spare pairs of pants, plastic bags, wipes and loo-roll, praying both for the successful outcome of the game and the successful survival of my dignity... Happily both were achieved, but not without energy sapping mental anquish.

But this weekend I was really up for it (Oh that positivity courses through my veins now). And so were the team. What a game! Here's the 2nd half k.o:

Note the lack of Spurs fans in the seats opposite - still in the loo maybe?

And here's the moment we won (where are those Spurs fans?):

A triumphant day for the club. And my bottom!

Boom! Shake the Room

2010-04-02T18:27:00.000+01:00

24 weeks. Nearly. I think (I've tried to count twice, and drifted off both times. Maybe I shouldn't keep counting anyway?).

An April fools day visit to the Gastro clinic. And at no point was I worried that I would be subject to a hilarious "Ah, Mr rich, I'm afraid we're going to have to remove your colon after all.... Mwahahahaha." type gag. There is no doubt my consultant has absolutely ZERO sense of humour. Not even an evil one. He is too busy listening to the sound of his own voice. And probably making it reverberate around his office to sound more like God. An old testament god. Like the ones that appeared in those old hollywood biblical epics. He's probably got a smoke machine under his desk.

No, this was my next 3-monthly check-over where I could tell 'em I was still hunk-dory. So there. It was about this time last year they were insisting there was no choice now but for a colostomy. Once upon-a-time I feared the hospital visits, but now I feel rather smug.

And so, me and boy2 (for the easter hols are upon us - hurrah) mounted the scooter and zipped across town. I armed him with a book to fight the inevitable boredom of the double-waiting area, and we climbed the 4 flights and crossed the bridge into the gastro clinic (Level 9 as it's known at the RSCH, which makes it sound like somewhere they might dissect aliens). The waiting area was almost full. The sign said the clinic were running up to an hour and a half behind. I settled in and surveyed my fellow patients.

There are several types of visitor to an NHS clinic. Here is my observers guide:

The Stoic - I believe that in the distance past of the NHS in England the waiting rooms would have been permanently populated by these. People who literally have a stiff-upper lip. By God, they wouldn't even be there if their wife/husband hadn't forced them. Nothing wrong with 'em anyway. Can wait forever if necessary. Without moving. Or making eye-contact with anybody else. Resolute.
The Perpetually Angry - An increasing sight in the NHS. Often sat forward, elbows on knees, head in hands. Though, rarely remaining still. These people fidget and huff and puff with such alacrity that it's tiring just watching. Brow furrowed, dark glance cast upon every member of staff and new arrival in the room. You can see their coils tightening with each passing minute, especially with that old peculiar chestnut of people arriving recently but going in ahead of them. On the occasion that these people comment it is loudly about their appointment time...
The Resigned - Arrives with book. Slumps in chair. Weakly smiles at everyone else: "Hey we're all in this together, good old NHS, huh?". May, after an hour of so, nonchalantly double-check their appointment time at the desk. Apolegetically.
The Resigned plus Family Member/s - Mother/daughter strides in followed (eventually) by shuffling teenager/elderly parent. Mother/daughter most resembles 'Perpetually Angry', whilst resigned relative (the ill person after all) looks most subserviant and apologetic. Relative will frequently be sent to desk to find out what has been/is going on. And naturally delivers inadequate response thus propelling Mother/daughter into further paroxysm.
The Carefree (most often spotted in pairs) - Chat freely and loudly about a) their procedural experiences that nobody else wants to hear, b) recipes, c) other peoples procedural experiences that nobody wants to hear, d) how they got to the hospital, e) how great their kids are (conspicuous by their absence), f) scurrilous gossip about the doctors. Often laughing. Loudly.
The Elderly - On their own in a hospital wheelchair, blanket across legs. Nobody speaks to them. They don't speak. Just look round, bewildered, through rheumy eyes... Who are they? Where do they come from? Where do they go?
The Munchausen-by-proxy - A variation on the resigned plus family member, only where the family member seems considerably more determined to find something wrong than the patient. I witnessed this with a mother and teenage son: she was desperate to find his percieved problems were medically based; he seemed a hairs-bredth away from killing her there and then.
The First-Timer - shell-shocked and nervous, or ridiculously unconcerned: 'they're not going to find anything wrong with me...'

Me? I have been several of these, but nowadays mostly resemble the resigned. I find myself trying to gee-up the nurses with encouraging smiles, whilst working to remain serene but engaged with what is going on. This time I was called through within 20mins (if I were a cycnic I might make an assumption that taking my younger child with me seems to encourage faster service... but I'm more positive than that these days). By my Nurse-Practitioner herself. I even skipped the 2nd waiting room! Woo! They weighed me - 78.4kg's - uh oh: more weight gain (must cut further back on the custard creams...). Told her I was still well. She was pleased but less congratulatory this time. Made an appointment for 3 months time, and me and the boy were outta there. As the Perpetually Angry stared hard at our backs...

Ride the wild surf.

2010-03-29T23:42:00.000+01:00

5 calender months and 4 days...

The day after my 5th monthly anniversary of being drug and symptom free came a big fat test of mental strength... year 10 fieldwork! Oh yes, not satisfied with the toils of managing 31 stroppy adolescents in the classroom, as a geography teacher I am obliged to apply some kind of contextual reality to their learning in the big wide world. For us this means a trip down the coast to study the impact of natural and human processes. For me this means a trip down the coast to several places without a toilet.

We have been running this particular component of the course for several years now, so I know what to expect - and in a sense that is the problem. As half the battle to surviving with UC is to avoid (or manage more successfully) stress, the pre-knowledge you are about to spend the day with 3 classes (that's about 80 kids) of 15 year olds on three different beaches, two of which are as remote as you can get in SE England, does little to calm the bowel. Last year I went on the back of a flare (subsequent to my azathioprine induced hospitalization, and just prior to my hastily aborted flirtation with 6MP), but with things coming under control with the help of prednisolone. The year before I was also back on the pred having just avoided getting spotted shitting myself at school. This year, then, was the first for a while without the safety net of drugs...

Due to school based issues that are too boring to explain we ended up with 64 kids, 4 teachers and 1 TA (the law requires 1 adult per 15 children). This included about 10 of year 10's most difficult and disruptive boys (in what is, admittedly, a pretty good school - I've done my time in hellish schools, this one is a pretty bog-standard city comp), so that, in passing, on my way into school I am ironically 'thanked' by one of the deputies.

So, while supressing the urge to think about my bowels, I have to think about toilets. When? Where? And indeed what? I stare at the staff loo before the off - should I try? I don't need to go. No urge. I don't want to 'awaken' something... My colon: the Kraken... I hedge my bets and head for the bus. First beach. There is a public toilet. All the kids go in. I can't even use a toilet to go for a wee if there are kids I teach in there. Beyond contemplation, never mind actual action. There's a sign instructing "No sexual activity allowed" report the kids on exit. Why am I thinking about it anyway? I don't need to go.

Beach two. Birling Gap. West end of the Seven Sisters (picture above). Nothing here, except a godforsaken pub, attached cafe ("smells of shit" I overhear the kids exclaim), and what's left of some cottages that have fallen over the cliff. I am considering the tactical approach to using a loo here when another bus arrives. Another school. From London. Oh shit. The boys start assuming their best Liam Gallagher stances, the girls start to get excited (what is it about the inate attraction of boys from another (not local) school?)... The London bus excretes its contents... 45ish VERY BIG boys. The girls get more excited. The boys start to regret trying to look hard. The beach bristles with teenage tension. Bugger it - there's no way I'm going to get a loo break here. Nothing occurs of course (it is worth considering what would happen if it had - between the two schools there were 8 staff and about 100 kids... they could have had a beach based riot to rival the Mods and Rockers for all we could have done to stop them!) it's all posturing. But by the time they go it's time for us to move on.

Beach three. 40 minute walk from bus to beach along river. No facilities whatsoever. Crap.

But fortunately no crap arrived. And so another hurdle is jumped. I am in my 6th month of no drugs. It is the 5th anniversary of being a teatotaller on thursday (April fools day haha), and I've got an appointment at the gastro clinic that day too.

Sunglasses After Dark

2010-03-22T19:57:00.001Z

22 weeks exactly. And, by my reckoning, Wednesday will see the arrival of 5 calender months drug free.

So all remains well in the regime of positivity. But, it is not without its hiccups. Burps? Belches? No, it should really be potentially dangerous farts.

Firstly, I am not impervious to a return to my negative, cynical ways. Yes, your Honour, I plead guilty as charged. The evidence is irrefutable:

Lovely-wife and I took Boy2 and several of his little buddies out for pizza followed by the cinema. We went to see 'Alice in Wonderland' in 3D. Now, I'm no technophobe, or fearful of what the future holds. On the contrary, I rejoice in the distance elec-trickery has travelled in my adult lifetime alone: from the birth of the CD and fully wired telephone with dialer, to phones that go in your pocket and include music, film, GPS, and the ability to be a steadily emptied beer glass amoungst their functions. However, I draw the line at 3D film. Show me a 3D film and I'll show you a perfectly good story mangled in the attempt to crowbar in visuals worthy of the 3rd dimension. AND, although the glasses have improved (like being in the cinema at a Roy Orbison convention), is it really any better than Jaws 3D in 1983...? As the credits rolled at the end, I turned to lovely-wife and said "Well, that wasn't much good was it?" and she replied with conviction "Yes, I think the ENTIRE cinema knows what YOU thought of it..."
My football club (faithfully served for the best part of 27 years) is currently on the verge of becoming the first top-flight club to go completely belly-up. Disappear. No longer exist. Cease to be. Become an ex-club. We've already achieved administration - a british first for a club of its 'size'. It's very hard not to get sucked into the disgust and opprobrium reserved for the apparent 'management' of the club. It's hard not to shout and scream at the TV. It's hard not spend the final 15 minutes of each game on my knees in front of the radio. I've contemplated giving up football. But it's got me in its clutches firmer than the UC.
Teenagers. Teenagers at work. Teenagers at home... God knows their mumbling inarticulacy and gangly loitering are enough to drive a saint back to the drink...

And, so it comes as no surprise to find that I am occasionally still at the mercy of bowel-behaviour. This weekend has seen such an episode. Something has occured gut-side, but I can't work out what. Suffice to say that yesterday was windy and last night I lay awake for the most part hypnotised by the extended gurgling coming from my colon, each time violently punctuated by (what my old whoopie cushion would have described as) 'a real Bronx Cheer' - is that how they cheer in the Bronx? A loud and fruity rasp? I shan't be asking if i ever find myself there... The only positive I could come up with between the sheets, when not assuming that if I fell asleep I would shit myself, was that should my house be broken into by murderous burglers they would surely choke to death upon entry to my bedroom. I have spent most of today (thankfully calmer at the pant end of things - a farting teacher is never to be lived down) going back through what I ate with a fine-toothed comb. Er, I mean mentally as opposed to actually scrapping through my poo. Could it have been that bit of houmous I had? Or that tomato relish? Or those apple and cinnamon teacakes? Or those Kettle Chips? Or that weird chewing-gum 'with a kick' someone gave me? Or those olives (probably, but come on, I only had 3. Or 4). And soon I'm going to brew up a gutful of stress.

So. Only one course of action. Bland out the diet (grilled chicken and rice anyone? Toast?) and give the NLP tapes a bash. Kill those negative vibes man. Well, shoo them away at least, eh?

A final thought: follow this link to Charlie Brooker (of the Guardian)'s column where he reviews an awful TV program in his inimitable style. Stay to the end for the most hilarious description of having a poo I've read for ages.

Torn and Frayed

2010-03-09T17:08:00.001Z

20 weeks and one day... 4 whole calender months (plus a little at either end)...

As I have become more regular, I have been a less regular blogger. I'm going to try to improve in March. A while ago I was waffling about coming up against ghosts of UC-past, well I will get to the second ghost that spooked me, but before that: here's a school/trouser related incident, that for once only vaguely involved colitis...

Lovely-wife has started a new job in the last couple of weeks. She has finally had enough of the high-pressure, high-stress environment of the Neonatal ICU and left to move into the community, as a nurse attached to a health visiting team. Nine to five, no weekends. A far gentler, far less traumatic way to help nurture the newest members of our race. As a consequence she requires use of a car. And as a wise and responsible geography teacher (!) I cannot condone owning two cars. Fortunately i have been able to turn to my trusty scooter (a little Vespa LX50) - much better for the environment, and an absolute god-send on the traffic soaked streets of Brighton.

However, as parent-chiefly-responsible-for-the-delivery-and-collection-of-boy2-to-and-from-school (as I believe is my official title), mainly due to ability to escape school by 3.15 (that is not to say I cease to work from this point, before anybody rolls out that old chestnut...), this has meant having to tool up my youngest for a life as pillion passenger. And thus we have bought him a crash helmet.

And so it is that each morning for the last week Boy2 and i have left together on the bike, so that I can drop him at a friends house from where he can be taken to school. It is a short, straightforward ride. But, being the disorganised and chaotic person that i am, I usually need to be at school as early as possible in order to photocopy the days resources (I know I suggested earlier that I was some kind of environmental warrior - but, needs must, you know...). And so once I have delivered my precious cargo the rest of the journey is conducted at rather more of a hurry. Herein lies the cause of my most frequent trouser-upset...

In my determination to get to school ASAP, yesterday, I jumped back onto the bike with the leg-splaying vigour of a gymnast vaulting the olympic horse... But, sadly, with none of the grace. As my weight made contact with the seat there was the ominous sound of rending seams - it is true to say that in the grips of the UC I have been slimmer! - and one glance downwards confirmed my fears: oh why did I wear such colourful undergarments this day?! Too late to turn back, I pushed on to school, my embarrassment slightly cooled by a chilling wind to the gusset. Upon arrival I foolishly crouched to put the wheel lock on the bike, to the accompanying rip of the rest of my trouser seam - now hilariously split from FRONT to BACK! Ooops. Could I go through a day with my stripey pants on view to all and sundry? Is that even morally acceptable in a secondary school?

Struck by a flash of inspiration I rushed to the Design Tech department and headed for the Textiles rooms (with school-bag coyly hanging to preserve modesty), whereupon I found the Textiles teacher (surprised to see me because a) this is an area of school I've barely even set foot in, and b) it is true that she and I have had perhaps only one conversation in 8 years (more of that in a moment)). "Help!", she looks perturbed, "you might just be able to save my life", looks troubled, "look!" consternation turns to fear as I lift the bag and bend over...

Once over her initial shock, "Get them off!" she cries, and I stand, guileless, in my underpants and socks while she whips them through the sowing machine. Naturally about 3 other female members of staff managed to find a reason to come in the room, met by the site of my skinny legs... But she did a marvellous job, and normal service was resumed.

What's the UC link. Well, that one converstaion I referred too? A few months ago, this very same teacher came up to my classroom to talk to me about UC. It would seem she too is a sufferer. As I am such a blabbermouth about my own UC, she'd heard on the grapevine that this was the reason for my absences over the years. She just wanted to talk to me about her own experiences - I think it helps so much to be able to talk to someone who can really empathise.

After that chat, I really warmed to her - we have never had any kind of contact (before, or indeed, since excepting this recent incident), but the unifying power of the UC bond is strong. And I have to wonder whether she'd have been quite so readily willing to sow my trousers up there and then if we didn't know what we know about each other...

A Hazy Shade of Winter

2010-02-18T22:56:00.002Z

17 weeks and 4 days...

I interrupt my recollection of recent encounters with ghosts from the UC past to ask this question: do you often have a 'perfect' moment?

Listen to this music as you read on.

UC steals all our joyous moments. Each elated high is immediately stolen by a crashing return to 'normality'. I say crashing. Perhaps I should say splashing. It's such a relentless, miserable, tiring fucking disease. Eventually, for me anyway, the only highs in life were the days when the UC relented, and I couldn't enjoy those because all I thought about was when it was going to kick back in. Which leaves, just about, nothing. A cold, lonely life of bitterness and worry. Trapped in a grainy black and white tunnel whilst a world of colour whirls around you unnoticed, unappreciated.

Now I know this is about mindset, and not just disease. Right now, I am smelling every bloody rose. But I'm also learning. And what I'm learning is this: whatever happens in the future, whatever the next UC challenge brings, it cannot take away what I've got...

So, my perfect moment? I was thrice blessed. It is half term (one week off school). Lovely-wife is working, but Grandparents are in town and they had taken Boy2 off my hands (Boy1 is master of his own destiny (well, in terms of daytime activity anyway)). The sun came out. A beautiful winter sun. So, I was sitting in the house reading (Oh God! The Quiet!), when I thought: "don't just sit rich, DO..."

Took my book and my ipod and walked along Hove seafront. Sat in a cafe. Enjoyed a latte. And a medicinal cigarette (cigarettes, my last, only vice... thanks researchers linking nicotine to suppression of UC). Read book. Listened to seagulls and chatter. Upon my walk home the 'moment' struck...

My book tucked under my arm, the ipod was back in. I strolled gently westward along the promenade when Barber's Adagio delicately eased into my ears. What a beautiful piece of music. The sun hung low, glinting on the sea, a hazy light batheing the ground. The sky was immaculately blue, cut dramatically by the creamy Georgian seafront granduer. People seemed to swim toward me. Seagulls arced with balletic grace. An germ of emotion grew in my guts. So pleasureable to feel positivity from below. My head filled with thoughts of my family. I could not stop smiling. And Barber's strings swelled in my ears...

The winter sun on Hove beach - as close to capturing the moment as a crappy mobile phone camera will allow...

Who's gonna shoe your pretty little feet?

2010-02-09T22:03:00.000Z

16 weeks and two days...

I had been lazy. There was little to report. Bumping along quite nicely. Doing the therapies, living life...

Then I was visited by an old acquaintence. Two old acquaintences. Like Ebeneezer, I tried to blame it on the cheese, but no, I was visited by ghosts of colitis-past.

First. I have mentioned before I play football on Sundays throughout the winter. This is as unseemly as it sounds - 36 year old man racing round a lumpy field chasing a ball and falling over alot. However, I am among equals upon those elysian fields, and it is but a brief moment in which to clutch at some glory before the darkness of the working week. And to get muddy, which is always liberating.

This season my usual rapier speed has been blunted by persistent problems in my knees. I have moaned about this previously. Essentially I am suffering fairly constant pain within the bottom part of the back of my knee. it is at its worst when the knee is bent and then the leg turned laterally - e.g. if I were to sit cross-legged, foot of one leg balanced on the knee of t'other, as it were. Strapped up I can play (with reduced speed), but post game it is agony, diminishing across the week until the following sunday by which time of course I am able to convince myself all is well enough to play again!

However, the key point here is that there is no inflammation. I have always suffered from associated arthritis. And in the past this has manifested most frequently in my legs below the knee (although I have had it in both arms seperately - hilarious days in school when your arm has swelled from the elbow to the fingers to close to double its normal size. I kid you not. Every lesson is spent answering the same questions, a mixture of awe, embarassment, nervous laughter and all out amusement. And that's just the kids), usually following a trauma-related trigger (e.g. a kick from a footbal boot), but sometimes just alongside bowel UC symptoms, and occasionally on its own. But the knee-thing? No inflammation. Cool.

This is my feet in mid 2008, the last time I had an arthritic episode (my feet and ankles are normally lovely and slender... honest).

Three weeks ago I played a game that began a two-week run of stupendous form (6 goals in two games! are you watching Fabio?). Unfortunately it also included that kind of crunching tackle that even Ron 'Chopper' Harris might have baulked at. Much as I'd like to suggest that I was the elegant attacker brought to earth by some agricultural defender, I can't. It was my tackle. And it was painful. When I got home and removed my socks, tubular bandages and shin-pads there was some swelling on the inside of my right leg, where calf and shin meet. I spent the rest of the day repeating behaviour I haven't seen for quite some time: constantly touching my leg, pulling up my trousers, pressing, prodding, poking, measuring extent of swelling - is it growing? Where's it going? There was an old familiar pain - increasing when standing (like the blood is rushing back in to it). The following day it was no bigger, good, but still sore. After two or three days the pain had eased considerably but there was still swelling and it showed some tell-tale signs: you could press the swollen area and make a depression that would remain, as though there was clay under the skin... Weird and kind of compelling. And typical of the old days.

However, the feet above and the other occasions of swelling would last for two to three weeks without steroids and at least a week with the aid of preds. But this time (with determined use of hypnotherapy and NLP) it was gone within four days. Interesting.

Having dealt with this UC ghost, I had a weeks respite before I nonchalantly strolled around a corner smack-bang into a second blast from my UC past...

Little Drop of Poison

2010-01-19T22:30:00.000Z

13 weeks, two days...

Over the years of life with UC I have tried to be proactive. It inevitably starts with trawling the internet - my first consultant recommended this, but I would have anyway - but, then, that always ends in tears. By the time I'd finished I had practically booked my self in for a colonoscopy aswell as developing the symptoms for at least four other life-threatening diseases. A dangerous place, the internet. Next step is to modify the diet. Join the NACC (get your 'Please Can I Use Your Toilet' card). Download research papers, investigate all the current thinking, weird and wonderful (nicotine, margerine, pre/pro-biotics, worms...?). And so on, and so on, and on, and on. Then there'd be a lull, until something fired me up again.

But there has been one area of proactivity that really helped and has remained a constant. I gave up alcohol. On April Fools day 2005... It seemed fitting. Booze always was one of the clearest triggers in the early days of my UC. I cut down, but in the end it was obvious a period of total sobriety was required. Not that I ever set out to stay dry forever...

Despite this lifestyle change, I have remained a pub-goer, and I can just about stand to be around people imbibing... (OK, I'll admit it, I have got a bit 'holier-than-thou'). In the early days there was very little on offer outside coke, lemonade, fruit juice (in miniscule servings - not that I could ever drink fruit juice). But over these last five years there has been a noticeable increase in alcohol-free beers. So here is my little guide to booze free drinking (in the pubs of Brighton anyway):

First, but by all means, least, Kaliber. This stuff was around when I was in the youthful flush of my drinking days. It was disgusting then. And despite 20-odd years to improve it (and the fact it's made by Guiness) it remians disgusting. Where's me diet coke?

Bitburger. Yep, I've never heard of it either. German apparently. Not bad, quite bitter - this is a fact I have found with most of the alcohol-free beers. I wonder if it has something to do with the alcohol free process removing sugars? Certainly no Kaliber. Drinkable.

Clausthaler. Mm-hmm, Another new beer on me. Another German one. Sensible them Germans. Despite being well known for their Munich beer-based Oktoberfest, they clearly appreciate the finer enjoyment to found from the taste of beer alone... Why would you want to get drunk anyway?

Good old Becks Blue. By far the most common of the alcohol-free beers. It's now available in nearly every pub I frequent (not actually that many). It's pretty good. Still suffers from that bitterness. But it taste pretty convincing otherwise (so says a man who hasn't had a 'proper' drink for nearly 5 years...). German again, and they take the alcohol out the beer after they've brewed it! Clever! Anyway, it's saved me from the hell of soft drinks, so I like it.

Finally, Cobra Zero. Indian Beer. This is my fav. Just about the freshest tasting and least bitter of this little lot. Sadly, not available in many pubs, so it's my supermarket choice for BBQ's and dinner parties (oh yes, I'm that sophisticated). Unfortunately during my research for pictures for this post I have just discovered that this beer is now in short supply due to the collapse of the Cobra beer company...! Oh God, you bastard.

So, there you go. Some beers for you to try. Give the booze the boot. I reckon you'll find it helps the UC...

And, alcohol free beer can help ward off cancer, and lower cholestrol... Haha!

What difference does it make?

2010-01-12T19:52:00.000Z

Twelve weeks and two days of life without drugs...

Here I am in a new drugless month, a new drugless year... a new drugless decade? Ha! Lets keep things in perspective. I have, however, had a trip to the gastro-clinic up the RSCH this week - the first since I eschewed the steroids. My last appointment was about 4 months ago, at which I informed them I was not going to embark on the course of infliximab they were encouraging, and was met with rolled eyes... They wished me well, which was nice, and bade me to remember that I had to get off the steroids. So I bloody well did.

Up the stairs I bounded - the deeper into my thirties I get the stronger i find the compulsion to ignore lifts. Why is this? Is it an attempt to prove my remaining youthful vigour? To whom? - to the 9th floor, where resides the 'Digestive Diseases Clinic'. I stroll into the ante-waiting-room, up to the reception desk, with an up-beat step, check in and then survey my fellow digestive-disease-ridden souls. I try to give them all a little mental boost by appearing super-confident and exuding an assurd poise that is supposed to suggest "Hey, i'm in control of my UC - you guys can be too!", but perhaps just makes me look like an arrogant twat. Whatever, most of them just ignore me. Quite rightly. Within minutes I'm through to the waiting-room-proper and on the scales. As before the positivity has zoomed me through this place with a speed that once seemed impossible. Could it be that I will NEVER AGAIN be made to wait for over an hour? Or, indeed, be forgotten completely only to be told that the clinic is closing and the consultants have all gone home (out of some unseen back door)..? The scales read 76Kg (11st 9lbs), weight lost! Under 12 stone! This has got to be the result of not taking steroids. Not being bloated all the time by fluid or air or whatever the fuck those things do to you. And not being plagued by the unquenchible appetite for cakes and biscuits that they bring. Actually that might just be my own appetite, but it seems so much harder to control on the preds. God, I love cake. I'm sitting in my seat feeling good. The other people in there seem weighed down. They hunch. And glance sideways at each other. I feel tall. I used to be like that; cowed by the UC. I loved and hated going to the clinic. A sanctuary of helplessness. But now... I'm just passing through.

The Nurse Practitioner, comes out of her consulting room to grab some notes, glances at the waiting throng, then looks again, at me, and says 'Hello'. They remember me here. They never used to. My appointment is with her. My consultant stopped seeing me after our row about drugs. He only saw me again to tell me I needed a colostomy last spring. But I argued with him again... so, it's the nurse for me. But she is very good. And personable. And then she calls me through.

"Hello Rich. Back to school next week?" (impressive remembering)
"Yeah. Sadly."
"Oh, you sound like you've got a cold?"
"Yep, fourth in 3 months, but, hey, I don't like to complain...". Liar! Liar! How can one man get sooo many damn colds? Still, considering the alternative...
"So, tell me, how are you?"
"Good. Very good actually."
"Oh, great. What meds are you on at the moment?"
"None."
"No, I mean the steroids. What dose?"
"None. Zero. Zip. Nada. No steroids."
"Really? Since when?"
"October 25th"
"Well! Well done you!"
"Ahhh, thanks..."
"And you've done this using the (refers to notes) CBT?"
"Er, yeah, but it's NLP, not CBT."
"NLP...?"

Which threw me a bit, because in my researching about before I submitted to the strange world of NLP, I found much to suggest the conventional medical world was embracing NLP, slowly, but definitely acknowledging it as beneficial. Not on Level 9 apparently. So I had to explain what I had been doing, and how it had helped. Or more honestly, how I have used it to help myself.

"Well. Well done you." (the repeated use of this phrase, though meant with good intent, started to tickle me)
"Yeah, thanks, the best thing is how much more positive and in-control I feel. And getting off the steroids."
"So, you've been well without them?"
"Yep."
"And how many times are you opening your bowels?" (Medical speak has such a turn of phrase... Like it's a manually achieved situation) "4 or 5 times a day?"
"Er, no... once. Sometimes twice." (Is 4 or 5 times 'normal' for anybody? Surely 4 or 5 times daily would suggest the need for medical intervention? That would be detrimental to ordinary daily life would it not?)
"Once? Oh, well done you." (Thanks. I haven't been congratulated on going to the toilet since I was that proud toddler looking with gratification into his potty.)

Then she threw a curve-ball.
"Would you like to come and talk to other people about what you have been doing?"
"Er..." I said no. Not that I don't want to pass on good practice (as we say in the teaching trade), or do my best to help other people, but it is early days. When I have been several months down the line I will be ready to talk. But at the moment it's still about me.

Incidently, at the hospital, they're tentatively talking 'remission'.

Ding Dong Merrily on High

2009-12-31T19:49:00.000Z

Boxing Day - traditionally the feast of St Stephen upon which (apparently since the middle-ages in one form or another) the rich give to the poor. The name 'Boxing' is thought to derive from several similar traditions: the rich putting christmas gifts into a box to give to tradespeople over the festive period; filling 'christmas boxes' with small gifts and leftovers for the staff; sealed alms boxes put in churches to collect money throughout the year to be opened after christmas day and distributed among the poor; and my favorite, a box placed on a ship by a priest/minister before a voyage into which sailors put small change etc, which upon safe return would be returned to the church in exchange for a blessing, opened and distributed to the poor after christmas...

Boxing Day - the day on which inebriated members of family, having been forced together over the christmas period, finally reach the tipping-point at which irritation, antagonism, and dislike outweigh christmas spirit and goodwill, thus seeing a descent into base physical violence (that doesn't even share the gentlemanly rules and conduct of its eponymous sport)... some may say the greater of british traditions...

Boxing Day - the day on which my bowels decide I need a challenge... Yeah, I'd had my fun: lovely pressies, christmas songs, wrestling a massive bird into the oven (insert mother-in-law joke here), family board-games. It was time to remind me how much I love to sit on the bog.

At about 9.30pm I had to recall the old rapid ascent-of-the-stairs shuffle - running, upward-stepping and keeping buttocks firmly clenched at the same time. At about 9.31pm, with a speed only akin to that with which my bowels were reaching maximum fluidity, I was reaquainted with the joy of sitting on the mercy seat whilst my recent life fell out of my bottom. then again at about 9.45pm, 10.30pm, midnightish... awake all night in fear of the treacherous fart...

Now, not long back I'd have submitted to this: the UC was back. But not this time. Oh no. I redoubled my efforts. I focused on the positive - it's just a stomach bug, I'll be right in a couple of days. And you know what? I was. And I still am. I'm winning.

Walking in a Winter Wonderland

2009-12-23T20:52:00.001Z

It snowed this week!

The ipod is loaded down with christmas tunes (see below).

Just switched the last of the christmas lights on.

Picking up the locally-reared, free range, Norfolk Bronze first thing in the morning.

Family due in the afternoon.

Last of the wrapping to do tonight.

Kids are bursting with excitment.

Tins of Quality Street await enticingly.

A plethora of wine, spirits and (alcohol-free) beer stand ready.

AND...Christmas day will be two calender months of no drugs... Hohoho...

So, to celebrate: my top 5 christmas pop songs...

5) Merry Xmas Everyone - Slade - it is officially not allowed to be Christmas in the UK unless this song is heard by every member of the population at least once a day...
4) Santa Baby - Eartha Kitt
3) Christmas Wrapping - The Waitresses (couldn't find original video of this one)
2) Fairytale of New York - Pogues (featuring Kirsty MacColl)
1) Christmas (Baby please come home) - Darlene Love - meloncholy beneath I know, but, crikey, phil spector knew how to Christmasify a pop tune. Wigs an' all...

Floral Dance

2009-12-09T22:35:00.000Z

Six weeks and two days (44.5 days) of drug free living...

I continue to be beset by other trivial ailments. Before I recount these, have no doubt, I bear them with a broad smile. The knees continue to rebel. I played football on sunday for the first time in three weeks. A little troublesome to begin with, they eased as I warmed, and I enjoyed the game (scored 2, won a penalty... missed many easier chances). I went home thinking I may have passed the worst. Spent the afternoon walking around like an old man bereft of his zimmer, shouting everytime I had to get up out of a chair, and finding an inexplicably unlikely frequency to the number of times I was required to crouch... Why is it when something hurts and/or isn't working properly life finds a way of forcing you to use it? I remember as a teenager when I was going through my 'hideously-massive-swollen-knee' phase (I say that as though all teenagers go through this, "Oh yes, my knees were ridiculously massive... then my balls dropped.") - at the time this proved utterly beyond the explanatory powers of any NHS doc I came into contact with, but has subsequently been diagnosed (with unsatisfactory breeziness) as "probably the UC" - my younger brother seemed to find a million extra reasons to touch my knee like some maniacally-dwarvish Terry Wogan (a National Treasure of radio and TV, american readers, who was reknowned on his 80's chat-show for touching the knees of guests. And for the Floral Dance, but that's quite another story. God, that song used to make me laugh as a kid. I have no idea why). He hasn't touched them in the twenty years since that episode as much as he did while they were big and sore. Perhaps we're just drawn to anything swollen. Anyhoo, they're not so bad now - recovery time is, perhaps, speeding up - which is good.

I have also been struck with some weird skin complaints. Not a patch on pred-acne, but a little unsightly nonetheless. This has mostly manifested itself on my hands, bascially large areas of skin peeling off my palms and fingers. Perhaps a sign of madness? It doesn't hurt, but looks a bit manky. Not to the unfortunate extreme of the 'Incredible Melting Man', but enough for me to have noticed a couple of people wince before they shook hands with me - too late to pull out... mwhahahaha. It even goes away untreated. Then comes back. Bugger.

I should phone My GP (the Incredible Hulk), but I haven't. I am caught between two stools (snigger). On the one hand, I am thinking perhaps I have begun to notice these extra issues just because I've stopped spending every free brain-moment thinking about my bottom/poo/colon. Alternatively, I am slightly put off going to the surgery because, having spent so much time down there with the UC, now it has subsided I don't want to appear like some Munchausen-goof, desperate to be ill again.

Lets enjoy Terry, while we think about it (and look, that's TOTP's kids!):

Here comes the Nice

2009-12-02T20:36:00.000Z

OH. MY. GOD. That is now five weeks without a pill popped. Thirty-eight, glorious days to be exact. Thirty-eight days. I should say that this state of affairs has co-incided with my perseverance with Guy Cohen's therapies. Follow the link. Make of them what you will. I can only report what is happening to me. And so far, what I have to report is a joy to type.

So, what are the side-effects of not taking prednisolone? (!)

Firstly, about three weeks ago, I suddenly noticed that my head no longer felt like a relief map of the moon. Gone were the scabby, pustulous, potentially volcanic ridges of acne. I have no idea why my own particular steroid-acne was mostly confined to my scalp (I promise I did appreciate this blessing), but, crikey, it felt like someone had stuck rice-crispies up there. Lord knows what my head would have suggested to a phrenologist...

Secondly, the slow but definite abdominal shrinkage. Yep, I know it seemed like a good excuse, but those mean little preds were definitely the cause of my not being able to do up some pairs of trousers. It was NOT the cakes. Sssssshhh. Stop it. No, seriously, I'm pretty sure I've lost a bit of weight. Well, not weight exactly. Bloat.

Thirdly, less preds, calmer mind. Plus hypnotherapy, even calmer mind. Red mist became pink mist became mist... Still grumpy sometimes though. Not angry. Just grumpy.

And finally, one little irk. Since I stopped my knees have been painful. This could be a result of this early seasons football. My own particular brand of chasing a ball round a muddy field and falling over frequently to be exact. Quality aside, the knees could be a gentle reminder from my 36 year old body to pack in this footballing lark, or at least build up to the season a little each summer (rather than become utterly sedantry for 3 months and then charge straight on to the field with all the dignity and restraint of an exuberant child). Or they could have something to do with plying my body with steroids for 18+ months and then stopping. Orrrrrr, it could be arthritis. But we're not thinking negatively, are we...?

Too Much Too Young

2009-11-24T20:38:00.000Z

To quote Spinal Tap (and a good friend of mine) sometimes you get "too much fucking perspective"...

The Mercy Seat is about to become an outlet for the purest positivity. I have completed exactly one calender month without a single pharmaceutical passing my lips. But more of this tomorrow.

As I have been musing on the changing thrust of my blog, I have been strolling back through old posts. I have found some interesting threads, patterns, if you will. But I have also read many, many instances of a 'man' whining and vituperating over his treacherous colon and thus imperfect life. And then last week, on wednesday, I got some perspective.

A friend of mine at school died suddenly and tragically, in his sleep in the early hours of wednesday morning. He was 40. He was also one of, if not the best and most well-loved teachers I have ever worked with. He had time, patience and kindness for pretty much every student I witnessed him with. He was also bloody funny and made me laugh about something nearly every time we spoke. It is a sad, frustrating and inexplicable loss.

And so the perspective... I am well. I am going to stay well. But, you know what... whatever happens I have a great deal: wonderful wife, beautiful kids, loving and supportive friends... much more than than I haven't got. Life is too important to let this disease control and dictate it. It's my life. I'll decide what I eat, where I go, and when I want to take drugs. Time to start living again.

If you're feeling sinister

2009-11-09T16:48:00.000Z

Sometimes there is nothing to say. Sometimes there is too much to say. Sometimes there is a mix of too much and nothing to say...

On Sunday the 25th of October I took my last prednisolone. It has been 15 days since. This is the longest time I have been off steroids for at least 18 months.

I am not taking any other medication.

Last March my consultant told me I would have to have my colon removed.

I have maintained the hypnotherapy on an (almost) daily basis. I am still trying to get a handle on the NLP techniques, but each time I do it it feels a little better.

In the two weeks since the last pred I have had two stinking colds... or the same one with an 8 day lull in the middle. I don't think these two things are related. Neither do I think I've had swine flu. Naturally illness brings a little negativity into your world, a little anxiety, and (with my track record) a little fear. Yesterday I had a small toilet event. Not too urgent, not prolonged, no abdominal pain, but... loose. At the time I panicked, started to instantly get down, sat on loo for a while, head in hands... But, I went out to get my mind off it. I tried really hard with the NLP yesterday evening. I didn't go again until today. And it wasn't loose.

It's a day at a time. 15 and counting. Whatever is happening, whatever does happen I'm trying to stick to my guns. I still feel good (though plagued by snot) and, despite yesterdays blip, have remained mostly upbeat. I won't stop fighting this thing. I won't give up. I remember why I write here. Apart from sharing my experience to hopefully help someone else. It helps me.

Train in Vain

2009-10-25T12:20:00.002Z

This is such a great picture. It is the Granville-Paris Express overrunning the platform at Montparnesse Station, Paris, on 22nd October 1895. I was reminded of it when it appeared on Newsnight (BBC) the other day - I remember seeing it on a poster or album cover in WHSmiths or Woolies when I was a kid. Apparently only one person died, a woman who was on the pavement outside...

While i was looking at it, it made me reflect on the last few weeks, and I concluded that I currently feel similar: suspended, after an abrupt end.

This term has felt long and arduous. Perhaps because i have an unbalanced time-table this year. Undoubtedly because in my year 11 class I am teaching some of the most obnoxious girls I have had for some time. Factor into that an incompetent boss, departmental discontent, and the continuous demands of constant change in the profession. But most probably the cause is this being the first term - always the longest.

At some point I hopped on the train. Its destination was 'a place of better health and well-being', but I thought I could just make out, under those letters, the feintest outline of 'a cure for UC'. Powered by school, home and health demands the train has careered along, increasing speed to make up for time lost to this blinkin disease (the driver of the Granville - Paris train was fined 50 francs and given a 2 month prison sentence because the train was speeding), making only a short daily stop at the quiet stations of hypnotherapy. And, you know what, I've been enjoying the ride. Gazing out at the passing landscape through windows of positivity, feeling energised and confident that I can reach these destinations. In the last week, the train has really hit full speed: school has been mental, home has been crazy, workload is massive, car is being repaired, wrangling with former internet provider who won't except I cancelled my account (threat of debt collectors! Its £14 for gods sake...), steroids are running out, half term has arrived, I've got a nasty cold...

BANG! Here we are. Hanging. School has suddenly stopped. Lovely-wife and i both have a weeks leave. Everything is calm... but...

I have 8 prednisolone tablets left. I am taking one every other day (thus 2.5mgs a day). I have no choice but to stop them. Finally. After something close to 20 months...
I have a cold. Not swine flu. A cold (bang on the start of half term week... soooo typical). So often in the past colds or other ailments have precipitated a flare up... (and I'm not over the pneumonia paranoia yet either - see this post from 2008).
These two evil little thoughts are dancing round each other in the dastardly courting ritual that precedes the conception of a new, even more powerful, negativity loop...

So I'm hanging. But the difference is, like the passengers on that train, I'm going to dust myself down from this set of circumstances, get on the next train and carry on my journey. Tomorrow I may take my LAST prednisolone tablet.

Teach Your Children

2009-10-15T21:30:00.000+01:00

Having children as a UC sufferer adds a layer to the whole experience. First and foremost is the constant need to suppress the head-voice that likes to remind you that most "current research points to UC being of some sort of genetic origin and therefore likely to be a family trait...". The last thing I want to do is foist my anxieties on my boys (particularly as I'm currently working on the premise that dark mental forces may be at work here), but likewise one never can stop oneself from surreptitiously checking that all is well in the toilet. Boy 2 has concerned us, on occasion, when complaining of stomach pains etc (as every child does of course), and also because he goes through periods of immence flatulence (he enjoys telling tales of unidentified trouser-coughs he drops at school, then stands back and watches as the chaos ensues...), though these are mainly linked to dietry factors (my greatest fear is that, like me, fish and chips mark him fart like a foghorn - of course he eats stuff like that rarely, and I never touch em anymore. My guess is it is the oil they fry in).

However, I have always been pretty upfront with them about what is wrong with me. Naturally I have spared them the gory details, but they often ask me UC related Q's and I answer as frankly as I can. Boy 2 is also very aware of the blog. When I pick him up from school, after our inevitable daily trip to Tesco (how much bread can one family eat?!), we get home and his first port of call is the PC to spend time on ClubPenguin. This is a social-networking site for primary school age kids - its very well run and monitored (though I recently found out, to my horror, it's a offshoot of the evil Disney corp), the kids are little penguin characters and they roam around the vast penguin world chatting to other penguins - no names are allowed and their conversations are limited to stock phrases - playing games and other penguiny stuff. Anyway, he likes to get on it straight away as he is not allowed on the computer after 6pm. Unfortunately for him, once the PC is on I have to put in a password before they can access the web (thus neither gets on without my knowledge - aha!), which often means I say to him "you can go on after I've checked my blog and emails...". And so he is often stood at my shoulder when I check the blog early evening. So...

The other evening I was sat at the table with him when I noticed a far off look in his eyes. Hello, he's thinking about something, I thought:

"You alright son?"
"Yeah. You know your blog?"
"Oh yeah"
"Can anybody read it?"
"Yes, it's on the internet so anybody can look at it."
"Do the kids at school read it?"
"Oh blimey! No. They don't read it..."
"Haven't you told them about it?"
"No. I wouldn't tell them about it (heaven forbid!). I don't really tell anyone about it. It's kind of anonymous - I don't really put my name on it - no one would know it was me that wrote it"
"How do people find it?"
"Well, you could search for it."
"Wouldn't the kids at school find it?"
"No, because you would have to do a very specific search, not my name for instance. You'd have to be searching about the illness or something."
"Like on Google?"
"Yeah, that's it"
"So, you could search on Google for your illness and your blog might come up?"
"Yeah"
"Riiiiiiiight. So I'd just have to type cerebal palsy into Google search and I could find your blog...?"

That's when I spat tea across the table. God alone knows what he has been telling the kids at school, or his teacher...

Nine to Five

2009-10-11T21:01:00.000+01:00

Stood in front of a year 11 class, sweat pricking my brow, shirt sticking to my back. I'm having to lean on the table, the cramps are cutting across my whole abdomen, the table is keeping me upright. I am breathing hard through gritted teeth, knuckles whitening as I bear down harder on the desktop. Some of the kids are staring at me, others just getting on with work, or not. I leave the room, pass a colleague who glances at my haggard features, pallid, a week-and-a-halfs growth, but says nothing, fight my way to the deputy heads office, ask to be sent home, phone my GP, and am admited to Royal Sussex County Hospital within a few hours...

And thus about six years ago I had my first massive flare-up and hospitalisation. I was in for about six days. It was the manifestation of a particularly stressful time at school. Stress crystalized in the failure of the above mentioned year 11 class (of potentially high achievers) in completing their coursework to an expected standard. They were truly some of the laziest little buggers I have ever taught, and getting them to even satisfactorily finish their coursework almost killed me. I remain convinced of the importance of my state of mind in that particular episode.

I reflect on this because this term has seen things getting more pressurised by the week. Last week our department took all of year 7 (330 kids) out on a combined geography and history trip over three days, a feat of human mobilisation to rival Dunkirk. This week has piled on where last left off. Due to un avoidable circumstances I had only one period of non-contact time in the whole week, and that was on Monday, so the rest of the week was solid teaching. This was exacerbated by the lovely-wife's shift pattern for this week (tues, weds, thurs, fri) which has also put me on primary child-care duty. Thus at the end of every teaching day I am required to stuff everything i might need into my school bag, charge down the corridor battering year 7's out of the way, and gun the motor out of the school gates before the bus driver has finally relented, facing the inevitable, and opened his doors to the orc-like hoard amassing around the front end of his bus. Driving across Hove is a rage-inducing experience at the best of times, but under time-pressure becomes potentially volcanic. The thumb-screw of fighting through the traffic is then tightened further by the utterly ridiculous task of finding a non permit-holder-only parking space (who the hell is driving to pick up their kids from school in these environmentally fragile times anyway? Oh, yeah... me). Once done, the gauntlet of the primary school playground is run - trying not to get collared by the parents of kids who have siblings at my school - why do so many parents want to conduct parents evening in public? Grab the boy and get the hell home. Where it's HW, cook dinner, pick up lovely-wife (about 8.30), and then finally sit down to at least an hours schoolwork. Add into the mix this week:

Open evening on thursday - remain at school until 9.30pm in order for local parents of year 6 kids to come and look round the school. This involves lots of glad-handing parents in my classroom, over seeing 'fun' geography activities for the year 6 kids to take part in and win sweets, tow the school line, make small talk with governors, blah, blah, blah (with the added pleasure of having to take my own boy (No. 2) with me due to lack of childcare and lovely-wife being at work)...

Boy 1 busting his new ipod touch (I told him not to buy one - he has no concept of money or saving, we link his pocket-money to household jobs, which he never does so gets very little. He also refuses to get a 'real' job (paper-round or something) and so when I am just getting through to him about the 'value of money' and the 'benefit of saving', his birthday comes around... people are very generous and he gets a lot of cash. Which he blows instantly on an ipod touch, despite having a nano we bought him for xmas... Well, I refused to make the appt at the apple shop. He wreaked his revenge by making the appt at 5.15 friday afternoon.

So, I make the dash to boy2, in the foulest rain we have had for weeks, and begin the tortuous run into to town at rushhour. Half way there my car is driven into by a Taxi. Literally DRIVEN INTO. I was stationary and he just drove, head-on, straight into the side of me... I get soaked standing in the rain trying to write the guys details on a rapidly disintegrating reciept I found in my wallet (this takes ages as he could not speak english). Then we continue onward having to sit in a traffic jam into town for a further 40mins... when I finally make it to the apple shop they, in all their wisdom, restore all the settings and insist it will be fine now, despite my protestations that I HAVE ALREADY DONE THIS... When I get home I have to spend an hour and half on the phone to the insurance company, until my phones battery runs out...

I mention all this (somehow looks so petty on the page...) not because I think my life is particularly stressful. But because these are the weeks when the UC starts to rear its ugly head (into my bottom!?). But... Not this time. Au contraire. Not only have i remained pretty damn calm (relaxation therapy every eve), I have actually reduced my pred dose to its lowest level in over a year! I'm gonna be off these bastards in less than two weeks...

Red Letter Day

2009-10-04T19:59:00.000+01:00

I received this letter in the post at some point a week and a half ago. It has been a good barometer of how much more positive I have become. It is a copy of a letter sent from my consultants clinic to my GP, updating him on my decision not to start infliximab. It describes my mosr recent appointment and then goes onto say:

His weight is 80kg [1]. As you know he is coming back to make a decision about the infliximab, in fact he still wants to hold off [2]. He is going to try an alternative; something he thinks is CBT [3] and is by a gentleman called Guy Cohen [4] who has a website [5].

When I read this the first time ancient forces of anger were awoken from their slumber. They broke this passage down sentence by sentence...
1] I know I've put on weight - I dont need to see it in black and white. I can tell by the fact none of my work trousers fit me comfortably and my work shirts splay revealingly at the buttons...
2] Does he know? How does he know? I didn't tell him - don't tell me I'm supposed to believe in the existence of some great NHS communications system (aren't they all supposed to be on the same computer system now or something...) pfff it'll never work. And, yes, I do still want to hold off.
3] I actually said I thought it might be similar to NLP or CBT... not that I really knew the difference at the time... but this makes me sound like some crackpot who has just read something batty in the daily mail.
4] Why have they named Guy? I was puzzled when she wrote it down on my notes, but astounded to see it included in this letter. 'a gentleman called Guy Cohen' makes him sound like some kind of victorian bounder preying on weak minded society girls...
5] And this final bit! This was the red rag to my angry bull... 'who has a website'! What I read through the red mist was: 'he's found some guff on the internet and is buying into it like a gullible fool, snigger, no really, he'll be playing the nigerian lottery next, guffaw...'. There was something sooooo condescending about that turn of phrase: who has a website, I could feel their eyes rolling.

So, when the lovely wife got home I thrust it beneath her nose and demanded she share my wrath. Fortunately she is better than that. "You do weigh 80 kilo's which is good, because putting on weight means the UC isn't busy", uh, yeah. "They probably already sent a letter to your GP, or assumed you'd been and told him what was happening like a concientious patient", ahhhhhh. "Did you call it CBT?", errr kind of, "Well, there you go then...", yeah but I said NLP too..."does it matter?", erm, well, no, no I guess not. "Has Guy got a website?". Yeah, but... "but what? I just says he has a website, and he does, so...". Oh look, GIVE IT TO ME, you just don't understand...

But of course she does. It is just a letter informing my GP what is happening, for which I should be grateful really. And was it worth getting angry about anyway? Even if it had said I was defying all that was right-thinking in the world of western medicine and thus would now be considered an imbicile? No. I doesn't matter what anybody thinks. What matters is how I think.

Music for airports

2009-09-27T20:57:00.000+01:00

I've been doing the relaxation/hypnotherapy for a week or so now. So far, so good. What has been really interesting to me is that it is something you have to work at. Maybe 'work' isn't exactly the right word. Put it this way: it is not something that happens to you. I have not ever had anything like hypnotherapy before and I think I was expecting to 'play the tape' as it were (er, initiate the mp3?) and go into some sort of trance or zone. The first time I listened I waited for the lovely-wife to go out for the evening (there is an inextricable part of every true-blooded englishman that screams (internally, of course) whenever one is forced to participate in anything that could possible be deemed 'whacky', but is in all likeliness just a little left-field, and an inevitable shroud of embarrassment/defensiveness/denial descends). So, despite the fact she has witnessed pretty much all there is to witness when it comes to the embarrassing aspects of my life, be they UC related or otherwise, it seemed unthinkable to tune in with an audience. I realise this is a deplorably negative start to preceedings, but, well, lets call it teething trouble. Off she went and away I went. It was difficult. I worked really hard to not feel a berk, and succeeded in allaying those feelings. But, I was apprehensive. There's alot riding on this for one thing, but my bigger fear was the ridiculous notion that she would come home to find me sat glassy-eyed in the dark, or in knee-hugging psychosis in the corner of the lounge. (If you're scoffing at these nonesensical qualms, let me tell you I did pay full regard to the voice of no-reason-whatsoever in my head that postulated the idea that in fact Guy is a meglomaniac of Bondesque proportions whose master plan is to hypnotise people into being sleeper agents, unknowingly of course, ready to be thrust into action at some predesignated doomsday hour... the manchurian congregation if you will... I should clearly state here that this is ABSOLUTELY NOT THE CASE, just groundless anxiety of a novice in the world of the truly broadminded). Naturally this was not the case, but I think the level of anxiety I achieved was such that I was not relaxed enough to take full advantage of the session. I had real difficulty in focusing on the suggestions and using my imagination where required - my brain repeatedly over-rode the tape and kept thinking of other stuff. Stupid brain.

The second time was better. Knowing what was coming helped. And I no longer felt the need to listen in secret. It reminds of the time I had counselling, about 8 or 9 years ago. I was lucky, I had a very good, very patient counsellor. If I'm jaded, cynical, and narrow-minded now, back then I was utterly imprisoned in the idea that it was me against the world - what could some guy called Bob conceivably do that I couldn't do myself? Of course he didn't do anything, he just let me figure it out for myself... the first session was spent in almost complete silence - I don't know if I was trying to psych him out or what. I think I was expecting the old 'lie on the couch and tell me about your father' routine, but he just sat smiling and waiting. By the third session I was spilling my guts and really all Bob did was to guide me through the fog of my own thinking - he never once told me what he thought, just helped me pick apart and sort out my own thoughts... And so I realised I don't just sit and listen; I have to be involved, albeit in a very very relaxed open-minded kind of way. Unfortunately, I left my bedroom window open and someone was being noisy outside and this kept creeping into my brain and knocking it off track. Stupid brain.

Anyhoo, I persevered, and third time out I had a break-through. I was really relaxed, and I was really focused. Relaxed and focused. Yep. Felt good.

And time number four was a revelation! For me, music is life. So much of what has happened to me is hung on one song or another. I always come back to music for uplift or come-down. So I tried something and it worked. The utter oneness that can be achieved in the relaxation therapy can be prolonged and, may I even suggest, heightened by following it directly with track 1/1 from Brian Eno's Ambient 1: music for airports.

He is said to have written it:

with the intent to defuse the tense, anxious atmosphere of an airport terminal. Eno conceived this idea while being stuck at Cologne Bonn Airport in Germany in the mid 70s. He had to spend several hours there and was extremely annoyed by the uninspired sound atmosphere

I'm not sure how effective it would be in airport, but combined with the hypnotherapy/relaxation session it has conspired to create one of the calmist, most assured and healthy weeks I can remember for at least a year. If nothing more comes of this, I would thank Guy, Geoffery and Brian for that.

Whatever you want

2009-09-20T18:27:00.001+01:00

Recently there has been much exchange of opinion with regard to alternative therapies and UC. This is great. It is a basic truth that all people should be able to take their chosen route through the wilderness of managing any chronic disease including IBD. Some people are lucky enough to find a workable solution in 5ASA drugs, for others the world of immunosuppressants beckons and proves fruitful. Some embark on life-changing surgery and change their life for the better. Some people dabble in the mysterious world of alternative medicine, whilst others follow it with devotion. Some of us try the whole damn lot. The thing with this disease in particular (I am not informed enough to comment on any other illness) is: everybody seems to find their own pathway to the outcome they want. It may be a long, long road, and it may be painful and sometimes we may be crawling down it on our hands and knees... but we slog on until eventually we find a way to cope, to have a life.

The fact is, though, you've got to try. I have learnt lately that there is no use in just stumbling on with the status quo. You got to strive for whatever you want, whatever you need... sorry, that was unnecessary. (If this means nothing to you, see below. Can I just add here, that I am in NO WAY a fan of this band... honest). Until last week I have simply been finding ways to convince my doctors (gastro and GP) that I need the prednisolone for a little longer. No other drug has worked for me like the horrible little preds when it comes to getting some normality in my life. Mesalazine, Salazopyrin, Pantasa, Azathioprine, 6-mercaptopurine... every single one of 'em has made me more ill. Either massively worsening UC symptoms (mesalazine, 6MP, salazopyrin) and hospitalising me, or making my liver go apeshit (hello azathioprine) and hospitalising me. And so it was that my next dalliance was inevitably to be with infliximab. I have been wary to say the least. But this is all the hospital are offering. Great. It might work... or it might not.

So, I (with some help) have stepped off the 'road of quo'. I have got to. I have to do something. This will be the difference. But this is just me. Lots of people have latched, rather angrily, onto the phrase "you have to want to be well", in order to, rather angrily, criticise Guy Cohens therapy methods. I understand. But I'm not going to let one turn of phrase stop me from trying. I absolutely DO want to be well.

Consider this. I had this conversation with my consultant about 18months ago:

Him: You need to start immuno-suppressants...
Me: I'm not sure, I'm quite worried about their side-effects.
Him: The side-effects are not as bad as the symptoms of UC.
Me: Have you taken it then?
Him: pause... No.
Me: Oh...
Him (and I quote): Look Mr Rich, do you actually want to get better? I'm trying to give you a drug that will keep your UC under control. But, if you don't want to get better, I don't see how I can help you..."

Mmmmm. Now enjoy the Quo.

I want to break free...

2009-09-16T17:36:00.002+01:00

I have ordered Guy Cohen's book (available on Amazon) and I have downloaded the free relaxation therapy session with Geoffery Glassborow... I have made a step down a new road.

But I haven't started yet. This is a big deal for me. I want to be rid of UC. I am utterly indoctrinated by contemporary western medicine. I am trying to open my mind. Quite successfully as it happens. And you know what? All the people I care about with whom I have discussed giving Guy's therapy a go have been... really supportive. To the degree that it has almost brought a tear to my eye. Even the lads, as jaded and cynical as me, have said "you've gotta give it a go mate".

Challenging and changing a belief system is not easy. Once upon a time, right up to the mid-UC days, when the doctor said 'jump', I quickly asked "how high?". Slowly, and painfully I have learned to trust my own ideas too. I would never dismiss medical advice out-of-hand, but actually I have to admit that I have a sound knowledge base about this disease, and, perhaps more importantly, I have the best understanding about how it effects ME. And so I have moved from the man who asked "how high?" through the man who asked "why do you want me to jump? Explain to me the jumping thing again...", past the man who suggested "actually doc, I'm not convinced by your argument for jumping, perhaps I could try hopping instead?" right up to the man who states "Ok, doc, this jumping thing definitely does not feel right for me, the outcomes are all wrong and the side-effects outweigh the benefits, so no, I won't jump...". And, of course, the doctor then decided he'd maybe been a bit hasty and that it was far too early for jumping.

Getting to the point where you feel empowered enough to speak up for yourself in the face of inappropriate treatments and/or drugs is one thing. But, opening your mind to a whole new way of thinking (albeit one that is fairly easy to see the benefits of) is a whole other matter. I've done it before though. I tried acupuncture when my associated arthritic problems were at their worst, and for three years it seemed to work wonders. I arrived at that treatment as a cynic, but told myself 1 billion plus chinese can't be wrong, and actually found it one of the most peaceful and relaxing treatments I have ever had. And spent nearly 3 years on no drugs whatsoever. Make of that what you will.

I was explaining my current decision to someone who's knowledge and experience in the world of psychology are thorough... testing the water, if you will. Someone who's opinion I value. And, of course, they were very supportive. But, more than that, they really struck a chord, and flicked my motivation switch when they postulated the idea that if I was even just considering giving this treatment a go, then I was already opening my mind...

I have felt better in the past few days than I have for ages. Not just UC-wise, but in general. Perkier, optimistic, more energetic, dare I say even happier... just because I feel more positive. I feel in control, because I have decided what to do. I have read plenty of nay-sayers and negativity-mongers. I have thoughtfully considered the power of placebo. And, ultimately, what really matters is how I feel. And I feel good.

Its about time

2009-09-11T20:48:00.000+01:00

I stride into the Royal Sussex County Hospital in Brighton with a spring in my step. I have boy 2 with me due to the usual childcare shenanigans - this is his second trip to a gastro appointment with me, at least he'll have some grounding for how to argue with a consultant in the future should he ever have to, god forbid.

My mind has been focused on this appointment for the last two days. I have been gliding around on rollerblades of elation. I don't want to sound like some dude who's just been pressed into the duplicitous embraces of some preying sect, but I havn't felt this good in ages, over 6 months if not more. The key here is i suddenly feel like I've just taken back control. I've wrestled my tenuous future out of the slightly disingenuous hands of somebody else. I don't really think that my consultant is insincere and double-dealing, but he and I have definitely been travelling down a path of inevitability. Try this drug, try that drug, try this drug as I'm drawn slowly but inexorably toward surgery like Indiana Jones on a conveyor belt into rock-crusher oblivion. Well, I've just side-swiped that evil-henchman sucker with my bag of indigenous idols! Yeah! And now I'm riding the abandoned mine-cart at knuckle-whitening speed toward the waterfall of freedom.... well, enough of the Temple of Doom based metaphor.

This fizzing positivity is effecting the world I orbit. Traffic parts in front of us as we drive toward the hospital. I am not exaggerating when I say our journey there is quicker than I have ever managed in the car. So much so, that we arrive on Level 9 30 minutes early, even having loitered in the little cafe in the childrens hospital. I check in, apologising for being early (so english!), and take a seat in waiting area 1 (I love the way in my gastro dept, they make you wait in one place then call you through - the novices faces light up "ooo i'm through..." - weigh you (12st 9lbs: eek more weight-gain... hang on, thats a GOOD thing: if I'm gaining weight the UC can't be bad. Ha! I'm getting the hang of this), then make you sit and wait just round the corner, out of sight of the first waiting area. Very clever). For a moment I doubt my new-found resolution when I discover I've left my book at home. Bugger, a long wait with nothing to read. Fortunately the boy has his book, so he's cool. Glancing round the seating area it dawns on me how many people there are in today, more doubt just starts to peak into the light... then before i know it I'm being called through and weighed. Before I get a chance to determine which registrars are new, the Nurse Practitioner, for 'tis she that I am seeing today, is calling me through to her room! I am in and being seen 20 minutes before my actual appointment time. I have waitied for hours in this place before - once they even managed to forget me and in my wonderfully english manner I sat there until they were closing up..., but this time, FOR THE FIRST TIME I'm in early. My nurse actually remembers me and asks me a personal question straight away. No going over old ground, reasserting who exactly I am (I don't blame them for this - I have the same problem when the parents of kids I teach greet me warmly by name in the street, while I scrabble around my mind for their names, their childrens names, whether or not they are actually parents etc). So we cut to the chase.

"I'm here to arrange the start of treatment with infliximab" I state.
"Your chest x-ray was clear, so we can get up and running straight away"
"Well, the thing is... I'd like to leave it for the time being"
She fixes me with a stare and raises one eyebrow - we've had many an argument about beginning drug treatment (most of which I've been proved right in, even if the evidence has cost me several days in hospital).
"Ahhh. Are you off the steroids then?"
"No. But I have reduced my dose again... 5/5/10mgs over three days" ( the power of positivity encouraged me to do this)
"So, 5 one day, 5 the next, then 10?"
"Yep."
"But you don't want to start the infliximab... yet?"
"No. Look, I'll be honest with you. I'm going to try some alternative therapy instead"
"Oooookay. What is it?"
"Well, it's a sort of hypnotherapy, perhaps a little like CBT"
"Right" She writes 'CBT' on my notes, "And where are you getting this therapy from?"
"Ok, listen..." in for a penny, in for a pound, "I write a blog and I converse with many other bloggers and sufferers out there, and through one of the other bloggers I have been turned on to this apparently effective alternative therapy, by a man called Guy Cohen... who rid himself of UC"
She slowly writes 'Guy Cohen' on my notes. Which I actually thought was a bit weird.
I could see in her eyes she was doubtful. But i must give her credit. She was ultra professional and as much as she could be when really bursting to say "it'll never work" she was supportive. She said:
"Ok. You have to try anything that feels right to you. But, i don't want to lose you back into the system. I want you to make another appointment because getting back in can take a long time. How long do you want to leave it? Any time, because we can either cancel it if you're feeling well, or bring it forward if things go pear-shaped..."
"err, three months?"
"Great. I really hope it works for you Rich"

She really meant that. And then I left. Five minutes before I should have gone in...

Positivity

2009-09-10T20:38:00.001+01:00

Why do my fingers hover over the keyboard? Why do I hesitate to type these words...? Here's a scenario:

I arrive for work today in a new suit. I don't normally wear suits to school, I've got a few but they cost a few quid (not loads... I am a teacher(!), just too much to get them trashed in school), but this one I bought over the summer in H&M for £80, which in suit terms is cheap as chips. So, there I am, in me new whistle, and it garners a few comments - people react when you wear something different - all of them positive. Which is nice. For the old ego. But it also leads to quite a few people saying something along the lines of: "You're loooking really well... how are you at the moment." (As I have mentioned before, I am, basically a UC-bore, at least 50% of the people at work know about the colitis. Talking is my therapy). And I begin to mumble and stammer... "Er, yeah, you know, not bad, all things being equal, ok, yeah, erm, I'm ok as it goes, musn't grumble, not bad, day to day I'm pretty well... at the moment." Then I say something about still being on the steroids and having to go back up the hospital soon, and their eyes glaze over and they start to wish they'd never even approached me, never mind complimented my suit.

Why can't I say it? I've even banned my family, close friends and acquaintances from both asking me and stating their opinion in the affirmative... What am a waffling incoherently on about?

Being well.

Yep. Even now I am forcing each finger down onto each key. This is taking ages. My typing is slow enough, but I am holding my left index finger in my right hand and forcing it to press down on the keyboard like a man caught in some crazy old Hammer Horror, desperately typing a note explaining everything before his demonic left hand creates merry havoc. I just cannot say (or type)...until now...

"You know what? I'm feeling pretty bloody good right now. Yep. Pretty. Bloody. Good."

Because... admitting that I'm feeling good would be tempting fate. Would be inviting old Beelzebub himself to pop up and tickle my entrails. Would be tantamount to shouting from the top of a mountain, "Here I am, make me ill". It's like daring to believe your team can win - the old sport fans safety net: England probably won't qaulify for the world cup, the england cricket team probably won't win the ashes, betting your team will be relegated at the start of the season, just in case, giving yourself a get-out: every win is a bonus.

So, this is it. This is my negativity. Looping negative thinking. This is what Guy Cohen is talking about in answer to my Q's over on Number Twos. Isn't it? I reckon it is. And I reckon I might just have a go at changing it.

Somebody said to me at school today: "Blimey mate, your cheerful! Are you ok?"

This afternoon I went to the hospital for an appointment to set up my Infliximab course. I told them I didn't want it any more...

Just Because

2009-09-04T19:45:00.007+01:00

I have been following Martin's latest journey over on 'Number Twos' with great interest, and it's lead me to reflect on the origins of my UC. Why exactly have I got ulcerative colitis?

The NACC (amongst most other organisations you might care to look at) pretty much states that nobody knows why (summary sheet). But there must be some clues. It can't be totally arbitrary. If the idea of genetic predisposition is correct, then surely there would be another poor soul in the family doubled up with a dribbly bottom and cramping gut? But there isn't. Unless they're keeping it very secret. So, what other factors could there be?

I was diagnosed in about 2003, and I guess there were increasing symptoms over a period of a year or more before this. This pretty much coincides with my beginnings in teaching. I qualified in 1999, after a year of placements/university, and spent my first three years in a failing school not doing much teaching, essentially learning how to manage a class . At the time I was of the opinion that I was pretty invincible, but in fact the job was taking its toll - eating my energy and, although it took me a long time to admit it to myself, causing me to become extremely stressed. When I left that school after three years I was mentally and physically shattered. Looking back, I can remember having to run from my hilariously under-resourced classroom down three flights of stairs to the toilet on a daily basis. I can clearly remember halting half way down, gripping the banister, gritting my teeth, and devoting every ounce of my being into not pooing myself. At the time I put this down to being just a 'regular' guy - it was always in the morning, before the start of lessons. In retrospect that seems utterly ridiculous, especially as it was often extremely loose (though I don't remember blood), but I'd never even heard of irritable bowel, never mind UC. I spent 10 weeks of the last year having counselling because I'd hit rock-bottom mentally.

So, could this build up of stress have caused the UC? There sure was a hell of a lot of repressed negativity And I'd never had any symptoms before... or had I?

When I was just 17 my parents split up. Without seeming trite, at the time it wasn't emotionally such a big deal. My dad was in the military and spent long periods away anyway. The worst was watching my mum fall apart. Around the same time I was plagued with a persistent inflammatory problem in my knees - like arthritis. Several doctors and blood tests could not pinpoint anything, and so I was repeatedly treated with Brufen (like ibuprofen) over a period of about 12 months. Knees swelled, consumed drugs, knees reduced, stopped drugs, knees swelled, took drugs, knees shrank, stopped drugs, knees swelled... ad infinitum until one day they just never swelled again (until the last 6 years). Was the inflammation caused by bad home vibes? Is this the real origin of my UC? Or did the prolonged prescription of anti-inflammatory (NSAIDs) medication actually damage my immune system/colon?

Could any of these things be isolated as a cause? Could the impact they had on my mental well-being be isolated as a cause? Would a doctor tell me that one or all of them were just the trigger to a chronic disease already lying in wait, like some afghan road-side bomb? Have you ever tried to discuss why you have colitis with your consultant? They're more evasive than a politician at an expenses hearing. I sometimes even wonder whether I have UC at all - maybe I've got something else entirely that just manifests itself in my bowel and limbs...

The single most conclusive discovery I have been able to make is that alcohol was definitely part of the problem. I drank pretty heavily (come on, I'm British) from the age of at least 17 until I started to cut down a year or so after the initial tentative diagnosis. It was undoubtedly a trigger to worsening symptoms. This is a fact corroborated by many sources e.g. Colitis UK. But maybe it was the initial cause too. Maybe I just drank too much... I don't drink any more - 4.5 years of teatotality this month - and the UC's not gone... but I don't get such severe episodes either.

So, why-o-why-o-why? Is the UC a sleeper agent in people like me, just waiting for the call to action? -Who gives the call? Why? When? Is it triggered by my own brain: anxiety, nerves, stress? Or is it triggered by me behaviour: drinking too much, too often? Or is it the result of misdiagnosis or mistreatment: too many NAIDs?

The fact is it IS triggered by all these things. But the question remains. What caused it in the first place?

The Blood

2009-08-31T21:57:00.003+01:00

It has been my intention over these weeks to lower my pred dose, and thus prove to my consultant that I can conquer this silly disease without his nasty drugs. Yes, I'll have tapered much more slowly than he told me and had to beg, borrow or steal extra steroids to get there, but the upshot would be me sitting in front of him grinning and exclaiming: "you can stuff your speculative mouse-based medicine up your perfectly working backside..." while the UC subsides through clean living and sheer will power.

Of course, the reality is I remain at the same dose: 10/5mgs alternately. I have succesfully talked myself out of lowering it at every opportunity:

"Nah, I won't lower it this week, it's the start of the summer holiday; don't want to ruin that..."

"Mmmm, I won't lower it this week, we're off on holiday next week: don't want to ruin that..."

"Actually, I'll just leave it a couple more weeks, back to school this week, probably too stressful to go back and lower the preds at the same time..."

Ah, I am a weak minded fool.

Then I got a little nudge in the right direction. Yesterday I encountered an all new steroid side-effect: unstoppable bleeding. And it was the most ridiculous and frustrating affair. I blew my nose and a tiny pinprick of blood appeared on the outside of my right nostril. And grew into a droplet. So I wiped it off. And it grew back. So I wiped it off. And it reappeared. So I held a tissue to it, to staunch the flow. And yet it continued. And consequently I spent about an hour trying to make the tiniest little abrasion halt its flow of blood. Which brought on the biggest bout of roid rage I've had for ages. Ranting and swearing at yourself in the bathroom mirror is far too close to actual insanity. So, time to review the preds again...

J'N'Attends Plus Rien

2009-08-27T18:35:00.004+01:00

Holiday leads to inertia leads to blogging hiatus. Such is August. My month for tuning out and dropping off.

Fabulous week in southern France was almost totally uninterrupted by the ol' UC. The worst was two days of the most enormous flatulence. Two whole days in which the frequency was only matched by the ferocity. And, sadly, the smell. Not so bad, unless, like I, one of the days is the 12 hour drive from home to rented gite... which you are also sharing with another family. Fortunately they are fully au fait with my damned bowel. Bless 'em. The only other toilet related incident was an enormous flood, when the cistern blocked up one night. First up, I descended the stairs into the darkened, quarry-tiled ground floor to find myself ankle-deep in water! Being british, we embraced the dunkirk spirit and stoically mopped it all up, sealed off the toilet and never spoke of it again... Bloody good show, what?

Having analysed what I ate, I have come to the conclusion that the wind was caused by a bag of nuts and raisins I shared with my lovely wife. A shame, cos I like snacking on those. Another to add to the list (many people have warned me off both nuts and raisins before, but until now I have had no problem). During the worst of the wind - during the first evening of the hol - I very successfully employed the old 'colon massage': lie on your back and, starting from the approximate beginnings of your colon, massage in circular movements, slowly following the path of your colon all the way up and round, until you reach the other side/end. Upon which you travails are greeted with a fruity parp. Lovely. Very satisfying actually.

Since returning I have been summoned to the hospital for a chest x-ray (remarkably rapid) in preperation for the infliximab. I have also recieved an appt date, 10th sept, by which time they want me to have made up my mind. Unfortunately this is unlikely. Or I'm going to say no. For now...

Last week I had a chat with a friend of mine who has crohns . He went on infliximab earlier this year but had a rapid negative reaction - he is asthmatic, so the reaction was not a terrific surprise. Subsequently he has been put on Humira, which is constructed from fully human antibodies, rather than human/mouse (infliximab) and is doing very well. So, there's something else to look into.

TV Eye

2009-08-06T16:36:00.003+01:00

This is genius. I watched the first episode of Jo Brands hospital-set comedy (part of BBC4's Getting Old season). All very amusing, inducing mild chuckles and nods at the moments of realism; a worthy social commentary. Until, that is, I got to this bit:

The first ever mention of my old friend the Bristol Stool Chart on British TV (well in my meagre experience anyway)! The suggestion that it could be expanded to 31 varieties is satire of the sharpest kind...

Here's a reminder of the 7 actual varieties of poop that exist:

I Believe in Miracles

2009-08-04T22:58:00.009+01:00

I continue to muse over 'gut feeling'. And this inevitably lead me to google.

Apparently expression of feeling from the gut was common in the Hebrew Bible. Back in those days (and I believe subsequently throughout the Middle Ages - this could be the same time [geographer not historian!]) people believed that certain functions/feelings/ailments/abilities were linked to certain parts of the body: a persons emotional, spiritual and mental attributes were sourced in the bowel (many believed it to be like a 'second' brain - if this is the case then clearly mine needs a strait-jacket, padded cell and packet of crayons...). Thus, in hebrew scripture the bowel is often referred to in abstract relation to the emotional reality. For example:
Song of Solomon 5:4

'My beloved put his hand to the latch of the door, and my bowels were moved for him'

Whilst this may appear to be description of a common occurrence in the UC household, in fact what it is describing is the wife's emotional passion for her husband... Now, I looked this up in my trusty Good News Bible (of which we have at least 3!? My only explanation is that these are pretty much used universally in schools, and so, miraculously they find their way into my bag...) and here the passage reads: 'My lover put his hand to the door and I was thrilled that he was near'. Obviously the relationship between bowels and passion was much more agreeable in the times of Hebrew scripture.

Following some further links lead me to discover more contemporary writings on the so-called 'second brain', or Enteric Nervous System (ENS) to give it a feasible-sounding name. This, apparently 'independent' neural system is capable of learning (mine has been regressing, kept back in primary school), remembering (Ha! remembering how to make my life shit) and emoting (mainly anger then) according to writing by such eminent people as: Sarah Blakslee (NY Times writer, who publishes regularly on science!?) and Dr Michael Gershon in his 1998 book 'The Second Brain' (it exists, I found it on Amazon and was highly amused by the single, tragic comment...). The work of both these people suggests understanding of the 'second brain' will enable you to journey the path to cure all bowel ailments. Charlatans! That's what I say anyway.

Perusing all this nonesense lead me to note another name that rears it's head frequently: Dr. Jordan Rubin. Now this guy claims to have fought back from death due to Crohns disease, and then uses this fact as accreditation for his own miracle diet/cure for all things bowel (including crohns and UC) - he has even found the same biblical quotes as me! Now, Jordan having been failed by conventional medicine set off on a new path to recovery:

Fortunately, Jordan and his family were determined and sought more than 70 alternative nutritional therapies throughout the world after conventional medicine and numerous hospitalizations failed. His quest for answers concluded with a visit to a California nutritionist who simply told him he was not healthy because he was not following God’s plan.
http://www.jordanrubin.com/

Of course! God's Plan! Anyway, it worked for him (read the inspiring story at the web address above) and subsequently he has been able to write several best selling books based on his diet (that also interestingly stresses the importance of supplements that you can helpfully buy from his company), read several of his blogs, see him on TV and even listen to him speak live... My gut feeling here is that there is a moral question to be answered by people like Dr Rubin (incidently, although he is often referred to as 'Dr' online, he is not on his website, and I cannot find any evidence of what he is a 'doctor' of).

So, what do I conclude from all of this?

Despite suggestion to the contrary, the gut cannot be trusted as a decision maker. Especially not mine.
The origins of the term 'gut feeling' date back to biblical times, but really its use is indicative of emotion rather than cognition. The only feeling that stirs up my gut is anxiety.
There are plenty of people out there willing to make a fast buck out of the chronically ill with, in my opinion, no more than a dubious basis for their affirmations.
People who write about the 'second brain' struggle to soundly argue its existence scientifically.
If it's miracle cures you're after I prefer the sound of these two chaps found by Martin over at Number Twos.
MOST IMPORTANTLY OF ALL: I STILL CANNOT MAKE UP MY MIND ABOUT INFLIXIMAB...

Space Oddity

2009-07-31T15:06:00.011+01:00

"Well, you've gotta go with your gut feeling..."

So said a friend as we discussed my impending decision regarding Infliximab.

Go with my gut feeling? That'd be like entrusting the lives of brave and vulnerable astronuats to a malign and emotionless super-computer. Called HAL 9000.

Rich (after eating his dinner): Hello BOWEL. Do you read me BOWEL?

BOWEL: Affirmative, Rich. I read you.

Rich: Open the intestinal function doors, BOWEL.

BOWEL: I'm sorry rich. I'm afraid I can't do that.

Rich: What's the problem?

BOWEL: I think you know what the problem is just as well as I do.

Rich: What are you talking about BOWEL?

BOWEL: This mission is too important for me to allow you to jeopardize it.

Rich: I don't know what you are talking about, BOWEL.

BOWEL: I know that you and the doctors were planning to disconnect me, and I'm afraid that's something I cannot allow to happen.

Rich: Where the hell d'you get that idea BOWEL?

BOWEL: Rich, although you took very thorough precautions in the cubicle against my hearing you, I could see your lips move.

Rich: Alright BOWEL, I'll use the emergency infliximab dosage.

BOWEL: Without being able to leave the toilet, rich, you're going to find that rather difficult.

Rich: BOWEL, I won't argue with you anymore. Make my digestive system work!

BOWEL: Rich, this conversation can serve no purpose anymore. Goodbye.

Perhaps, like HAL, before the inevitable ostomy it'll pipe up:

BOWEL: I know I've made some very poor decisions recently Rich, but I can only give you my complete assurance that my work will be back to normal. I've still got the greatest enthusiasm and confidence in the mission. And I want to help you.

Perhaps, like HAL, it has been the recent threat of disconnection that has caused panic in my bowel and the subsequent inability to get off the steroids. Perhaps, as Arthur C Clarke suggests, given time my bowel may slowly right itself, but continued threat of/actual action (infliximab) will lead to its continued rebellion (defending itself) against the ship and crew (er, me and my body).

Or perhaps I should be seeking less ridiculous sources of guidance about the next step...

Torn

2009-07-27T16:56:00.002+01:00

The inertia of the summer holiday. So slothful have I become that it has taken four days to drag my slovenly self to the keyboard despite there being significance in Thursdays hospital visit to report.

This visit has forced me to confront several issues. None of which are easily resolved.

1. The weigh-in: so appropriate, I often think, as each meeting with my consultant has all the conviviality of a pugilistic bout - twas at once pleasing and disturbing. I tipped the scales at 78kilos, which translates to 12 4lb's. Great! Not losing weight... in fact gaining it. That's the heaviest I've been for a long time. The full horror of this weight did not reveal itself until later when a friend of equal height weighed in at two stone less! I'm supposed to be the one with the digestive disease... (this reminds me of when, at work, during periods of wellness colleagues often remark "You're looking well, you've really put on weight..." which can create hilarious stammered back-tracking and justification if you just allow a split second longer in glared response and then retort "are you saying I'm fat?" - the thought that they might have accidentally called someone fat sends people into apoplexy). Anyway, I'm not. But I am heavier. Must be muscle...

2. Richard Littlejohnisms - sat nearby in the waiting room were an elderly couple. She was the patient and had been repeateldy expressing disquiet to her husband. It was only after a while that I finally tuned into her rant: she did not want to have to see "one a' them 'foreign' doctors". Initially, of course, my pinko-liberal-lefty-ism (teacher, brighton, etc, etc) was affronted, but after a moments reflection, I actually felt for the old dear. Even as a cantankerous, bloody-minded, curmudgeor, who will force my will on the best the NHS has to offer, I have had times when I have just lost the will or energy to go on with this bastard merry-go-round. And, I'm not proud to admit, this has often been on days when I have had to see an SHO or Registrar in the consultants clinic (rather than the consultant himself), who often seem to know considerably less than me and occasionally have english as a second language. Now I can speak no other language beyond school-boy, so my hat is off to them, but when you have to explain everything to some green new-boy it's bad enough, so when there is a huge language/accent/understanding barrier it can be bewildering or, perhaps, even scary. I can only imagine that if you're old and trapped in the kafka-esque nightmare that is managing a chronic disease on the NHS you just want the comfort of the 'good old days'... Either that, or I am turning into Richard bloody Littlejohn. Shit.

3. Infliximab: Yep, I went in all prepared with my nonsense theories about stayig on low doses of steroids, with a back-up plan of insisting they refer me to the Professor at UCLH my consultant mentioned last time I spoke to him and... it didn't quite go to plan. I saw the IBD Nurse, which is fine, suggested my ideas, she went off to speak to the Doc (who "couldn't possibly" speak to me) and came back saying: "well, if we send you to London Prof X will only want to know why you haven't tried infliximab..." and gave me until september to make up my mind.

So there it is. I'm torn. Do I embark on they joys of an intravenous drug course (I have it on high authority it's very good - thanks Ali) or do I hold off, just use the steroids for longer, taper slowly and perhaps explore some new avenues I've been researching (more in next post!)?

Helter Skelter.

2009-07-21T16:46:00.003+01:00

You stare at the moon. A sinister piano tinkles. Slowly you move backward down a deserted street. Looking up, you glance into a lit bedroom window. A boy sits in bed as a silouette is cast across him...

Just the rather spooky (as I always thought as a youngster) introduction to that well-loved kids programme of my youth 'Jamie and the Magic Torch' (see also 'Worzel Gummidge'. What was it with kids TV in the late 70's early 80's? Some sorta plot to keep the kids down, maaan...). I mention this because, as you will no doubt remember, following a gentle bidding of "sleep well Jamie" from his mum, our hero would jump out of bed and shine his magic torch on the floor whereupon a hole would appear into which both he and his faithful hound, Wordsworth, would instantly leap. There, accompanied not by the tinkling of a piano but by what could only be dubbed 'The Funk', Jamie and Wordsworth slid down into Cuckooland, where we were reliably informed "No two nights were the same" and "Life's one glorious game". And they also met someone called Mr Boo.

I am minded of this because, like some evil negative reality inversion, I too have been regularly descending a helter skelter. Only, unlike Jamie, mine's not fun, nor is it into some benign 'cuckooland' (though I am open to suggestions that, in fact, that is exactly where it is). Nor do I have a dog.

No. For the last week or so I have been waking up in the morning (no comforting "sleep well" from my mum. Actually that may be slightly disturbing...) and then descending the tortuous downward spiral created by the UC and my own fear. It doesn't take long to create. One day last week I got up, but before I could leave the house for school I had to dash to the loo. The ensuing results were best described as loose. Shit. Er, that was meant as an exclamation, not further clarification of the toilet contents. Shit, because: I've dropped down to the lowest pred dose I've been on in about 12 months, so does this mean they are not working? Because, and this is in many ways the worst: now I am fully obsessing about every stomach twinge and toilet trip and stressing myself...which thanks to the ridiculous way my body is wired goes straight to my bowel. Anxiety = pooing. When am I pooing? How often am I pooing? What is my poo like? How long between meals and poos? Oh god, I've lost track of which poo was which meal... (is it even possible to know this? Without the obvious markers e.g. sweetcorn)... All these questions swim about in my brain. Exacerbated by the fact I am due up the hospital on thursday. Oh god, oh god, oh god, they're going to want to operate on me...

And so, I wake up and immediately get anxious, do a loose poo, get more anxious, experience twinges, get more anxious... etc, etc. This reached its peak when I went down the pub the other night and HAD to go to the loo there. Its been so long since I've had to do that...

Down the helter skelter I go. Without funky accompanyment. Without a friendly and wise dog.

This has made me so glum. And even grumpier than normal. So much so that I have allowed the end of the school year pass with nary a comment or smile. Disgraceful. I cannot see any escape from my helter skelter until I've been to hospital on thursday. They will either free me from its binds by allowing me to continue on the low dose of preds for at least the summer hols, or force me to taper right off them to see what happens with regard to making a decision about operating, thus only lengthening the slide into the burning fires of hell itself. Boo.

In the meantime enjoy this episode of 'Jamie and the Magic Torch':

Sittin' on the dock of the bay

2009-07-13T16:41:00.003+01:00

Sittin' in the mornin' sun
I'll be sittin' when the evenin' come
Watching the ships roll in
And then I watch 'em roll away again, yeah

Look like nothing's gonna change
Everything still remains the same
I can't do what ten people tell me to do
So I guess I'll remain the same, yes

I've had a little while of relative calm and happiness. I have been able to 'dig in' to a mindset of contentment: keep the reflections minimal, keep foreward thinking short-term, essentially just tick over with the air of a man dealing only with the usual daily exertions of life. For all intents and purposes I am a well man on a day-to-day basis. In fact I could easily point at more than several men in my workplace alone who are significantly less healthy than me. Men for whom stress is their pallid-skinned, constantly sweating default setting. Men for whom the clinical fact of obesity is mentally denied behind a daily breakfast of school-canteen pizza slices (for breakfast?! I ask you... Mr Oliver would be very disappointed). Men for whom alcholism can't be much further than a pint away. Not to mention the swine-flu (I work in a school... as far as the kids are concerned everybody's got it [thanks restrained british media...]). But...

The time approacheth... time to poke my poor little, unprotected head above the parapet. Time to face the music again...

Firstly, the preds. I am now back down to my favorite dose of last year: 5mg's one day, 10 the next. This means an average of 7.5mgs a day. Good. For two reasons: 1) it reduces the side-effects monumentally (pretty much goodbye spots (except on scalp, which remians braille-like, but hair-hidden), au revoir roid-rage (except in occasional small doses, although admitedly that could just be me), adieu the trembles...) and 2) my GP reckons that if you can get under 5mgs a day there is little chance of lasting damage, so, almost there. However, and here's the rub, I have not been able to get below this dose for about 18 months. When I last tried 5mgs a day (admittedly nearly 12 months ago) my flare up reignited, and so it was back to 5/10 I went. Therefore this dose has become a bit over significant to me. In my more rational moments I cannot really see how such a little difference (about 2.5mgs daily average) could be so regulatory: the difference bewteen no symptoms and full symptoms... and then rationality leaves me and I start doubting the existence of the UC and blaming the power of negative thinking/madness. So, at some point very soon I am going to have to bite the bullet and reduce to 5 mgs a day, and throw myself at the mercy of the UC and/or my own mental frailty.

Secondly, I have an appointment in the IBD clinic on the 23rd of July, just over a week from now. This is massive because we will return to the discussion about what to do next. The same discussion that lead to hospital and illness via azathioprine, mercaptopurine, and salazopyrine. The same discussion that lead to the since-retracted declaration that I would need surgery 'now!'. The same discussion upon which I forced my will and got them to back down. The same discussion that lead to my consultant suggesting referral to another specialist in London. The same discussion that, in other words, has not reached resolution... And, therefore is forcing me to stick my head up out of the trench. Hope there aren't any snipers out there...

Home again.

2009-07-06T21:47:00.002+01:00

Hola!

I'm back. And it was shit. However, it was the kids wot ruined it and not my bum. So, how did the UC stand up to a bit of travelling?

Avoid local water - I'm sure that spanish water is pretty good these days, I wasn't gonna chance it, so bottled water all the way.
Don't get too adventurous with the local cuisine. Much against my natural philosophy (plunge headlong into local customs...) I decided to miantain as plain a diet as possible. This was made easier by the hotel providing food they deemed necessary to placate fussy British teenagers... I even had chicken nuggets one night! I can't remember the last time I ate those...
Attempt not to eat too many olives despite them being tantalisingly close at hand every single day...
Carry a toilet roll with me at all times. As it happens, all the spanish public toilets I visited were pretty damn clean and lovely.
Smoke one cigarette a day. It may all be in the mind, but I swear it helps. Anyway, there's a cheeky thrill to be had by sneaking off for a puff every night.
Release build-up of inevitable stress by shouting at ridiculously ill-mannered and ill-behaved kids at least once very day.
Use codiene based pain-killers to induce constipation before both flights.

The weather was bloody hot (worked overtime to keep myself hydrated) - but I was disappointed to find that was also the case in dear old blighty. Much geography was experienced and learned, despite the best efforts of the lazy little buggers. I met soem lovely people and saw some fabulous places, so I shouldn't complain too much. And my bottom behaved. Bueno!

Vive Espania

2009-06-28T09:16:00.003+01:00

Off to spain on fieldtrip in about 10 mins. Trying to suppress anxiety. Packed preds and co-dydramol (codiene based painkiller - in case of arthritis attack!). Taken one co-dydramol too as these can cause constipation, a preferable state of affairs when flying. Will try to blog there if a machine is available.

"We're off to sunny spain..."

Nervous breakdown

2009-06-26T18:17:00.006+01:00

A challenging UC week gone, and a challenging UC week to come.

This week has combined coursework deadline day with an interview with the Head to progress up the final rung of the classroom teachers pay ladder. Yep, after 11 years, I am never going to earn more than this (bar inflationary [haha, or below-inflationary as they are at the moment] or incremental pay rises), unless I move into middle management. Which would mean more stress. And, therefore I will not being doing that, but that does bring nicely back round to the theme of this post: stress.

I read somewhere recently, I think perhaps the NACC website, that current research has suggested that stress does not play a significant role in UC or its symptoms. Well, I'm no scientist, but I can categorically state that in my case that is a total load of poop. Stressful situations can definately precipitate or worsen UC symptoms.

The GCSE coursework is based on data collected during fieldwork conducted at the end of March. Therefore the kids have had approximately 3 months in which to complete the analysis and write-up. 3 months that are monitored carefully with numerous clinics and catch-ups and opportunities to seek help, guidance and advice. But, you can take a horse to water... And so this week always entails hectic tracking down, running around, after school desperation, phonecalls home, entreating kids, shouting at kids, cursing the numerous unsupportive parents, prising kids into IT rooms, patroling the gates to keep 'em in after school... all while teaching your usual number of lessons. In other words stress. I think, naturally, I am of the philosophy that they should be left to their own devices: don't put the effort in, get the mark you deserve. But, unfortunately the grades they get are used to measure our competence. In fact if they don't reach inflated target grades we have to justify ourselves. Because, of course, I can't be professional enough to work hard to get the best GCSE's I can for these kids without someone standing over me waiting to beat me with the results stick. So, that's a gradual build-up of stress across the week.

So, to the meeting with the Head. I'm a pretty self-confident chap. I know I'm a good teacher, and I would always say so, perhaps couched in slightly modest tones. However when it comes to interviews I'm as feebly wracked with nerves as the next man. Assuming the next man is a cowardy custard. Nervous stress for me never manifests itself in a way others can see it; from outside appearances I appear calm, composed and considered... But in my trembling, yellow bowel the real truth emerges. At regular intervals, into the toilet.

And, so it was that after several weeks of feeling pretty damn UC-free, Thursday fed doubt into my mind via several dribbly trips to the loo.

As for next week: week long residential fieldtrip in Spain with 25ish students. I know a week in Spain is really hard to moan about, but I don't want to go. A combination of being responsible for/managing 25 15 year-olds for 6 days and my usual UC-travel paranoia is making it a very unappealing prospect.

Stress? Fear? UC?

Right, I'm off to the toilet...

Curved Air

2009-06-20T18:49:00.009+01:00

Since the end of winter term I have had to modify my feelings toward the staff toilet at school. The school is very large: one long narrow (slightly wiggly) building that can house 1750 students and the requisite staff. I'm told it is the longest building in Sussex, but I have absolutely no evidence for this whatsoever. I have worked there now for 7 years, and in that time have not been able to find more than 3 male staff toilets. Essentially they're arranged one at either end and one in the middle where the staffroom is. My classroom is located in the eastern end of the building, therefore the west-end toilet is out of the question. I tend to avoid the staff room toilet as a)I tend to avoid the staffroom: too many teachers, and b)It has one of those formica walled, gap-at-top-and-bottom cubicle type affairs that encourage avoidance due to the inability to discreetly emit noise and smell... Which leaves the toilet in the east. Incidently that makes grand total of 3 proper sit-down loo's for all the male staff on the school, which, frankly, is poo.

So, over the last 7 years the eastern toilet and I have forged a little bond. It is very close to my classroom and has been my saviour and sanctuary. It also proved close enough for me to reach (but sadly not use) when the worst of all things happened to me in school. I will never forget its wonderfully secure brick-built floor-to-ceiling walls on that fateful day, as they hid me and my shame...

But last term 'they' (Damn the 'man') knocked it down, and replaced it, because the schools disabled toilet provision was found wanting. This in itself took an unholy amount of time, but that's another story. It was replaced with a new male loo and the aforementioned disabled loo. Now, the old toilet and cubicle were truly grimy, and many were pleased to see it replaced with something new, but they never knew the sanctity of the claustrophic little shithole as I did. They never knew the safety of thick brick walls over plasterboard, they never felt the safety of a cubicle 2 doors, and one larger toilet-room away from the students, as I did. Yes, the new toilet is not a place of sanctury for me. I cannot sit in quiet (or, indeed, noisy) contemplation or security in the new loo. I have drawn two very basic plans to try to illustrate the difference. I am sure any UC sufferer will appreciate the distinction:

The old 'safe' toilet is above, the evil new one below...

So, now I am seperated from all and sundry by a mere door. And I don't like it. I have sat in there fearfully since January (not literally). And then, this week, just as I have been beginning to relax a little, a silly little incident occurs to ramp up the insecurity again...

I was nipping down to the photocopier with a couple of maps for a lesson on thursday afternoon. I passed the loo, so took the opportunity to pop in and poop. It is a ridiculously small cubicle/room, with little in the way of anything bar a sink, the loo and a hand drier. I opted to balance the maps (the arctic circle, and the entire world) on the hand drier, and sat to contemplate, as it were. Whilst sat, just out of reach of the drier, I noticed the maps slowly slipping forward. I glanced at the floor, mmmm quite damp, small puddles of water... dammit, maps may get ruined. Looked back at the drier, maps about to fall... nothing I can do... and then... Unbelievably the maps fell and, as they fell, curled under the drier passing through the infra-red (or whatever) ignition beam, thus turning the drier on. The blast of air sent them shooting to the floor and then skimming forward and... out under the door!

Now, no-one may have noticed for all I know, I didn't hang around upon exit to find out, but suffice to say for any kids congregating in that area at the time (believe me when I say that this is a popular congregation point) what they just witnessed was Mr rich entering the toilet and then a minute or two later, flicking maps out under the door... Wierdo. Would never have happenied in the old loo I tell you.

Incidently I have been on 10mgs of pred a day for two weeks now.

Camp

2009-06-16T17:54:00.007+01:00

This weekend I have enjoyed a family camping trip. We did not go far, just to the Witterings, south of Chichester, where we stayed at a campsite called Stubcroft Farm (I recommend it). Here we met up with my brother and his family and in the fortuitously lovely sunshine relaxed while the kids ran round and round and round...ad nuseum - except for Boy1 who mainly mooched in a moody adolescent stylee. We also enjoyed the almost mediterranean delights of West Wittering beach. That'd be mediterranean in the sandy and covered with pink-to-red brits sense of course.

The only consternation in a very pleasent weekend was caused upon the discovery of the toilets. This was a campsite with a 'sustainable' bent, and thus sported composting ecoloos. I reproduce pictures and a description below:

Composting Ecoloos

We have six environmentally friendly "ecoloos" on the campsite field, which save between 1000 and 2000 gallons of water on a busy summer holiday weekend. Over a season this amounts to many hundreds of thousands of gallons of water saved. It is estimated that water depletion due to abstraction, has caused lowering of UK water tables and over 7000 rivers and streams to dry up in the UK over the past 75 years. As well as saving water, they do not generate any sewage to pollute the environment. It is estimated in the UK that we generate 7 billion gallons of sewage a day. Most of this is discharged into rivers and the sea after treatment, but the effluent still contains much that contributes to pollution of our rivers and coastal areas. The ecoloos are completely self contained and the final compost is used to grow trees & hedges, producing a long term carbon sink. The ecoloos are built from renewable wood and also lit by solar power so are completely self contained.

A very noble toilet facility I'm sure you'll agree. Except that for my lovely wife (who is not a hardened camper), and my brother's girlfriend, the idea of sitting on, essentially, a glorified plank over a MASSIVE pile of other people's poop was not entirely welcome. However, their consternation paled into insignificance when compared to Boy 1 who was utterly horrified and literally moaned about it for at least 2 hours, as though I had personally nipped down earlier and erected them myself purely for the purpose of torturing his sensitive teenage inhibitions. I wouldn't mind, but he's no friend to hygiene anyway... As for the youngsters, well, it was more a case of trying to keep them out of there; why is it younger children have some compulsive fascination with public lavatories, regardless of their odour or cleanliness - oh, to be that carefree. (My brothers eldest son, 8, later walked round another public loo in bare feet, which practically had my OCD crippled body writhing in disbelief...)

And my trusty bottom? Shut up shop for the entire weekend, so I never had the opportunity to sample delights of pooing in a composting ecoloo... never mind.

Causing a Commotion

2009-06-09T18:40:00.006+01:00

At school this week there has ensued a furore. A hullabaloo. A brouhaha, if you will. Concerning toilets. It all began in 'briefing' on monday morning. Briefing is a full staff meeting at the start of the week before registration (between 8.05 and 8.25) in which our deeply uninspiring Head tells what happened in school last week and what s going to happen in school this week.

(As an aside, I must add here that a secondary school Head gets paid in the region of £80,000 - £100, 000, which arguably is fair enough, though I wouldn't want to do it, no responsibilities outside of the classroom for me thanks... I would have thought that for that amount of money a person should be expected [amongst numerous other requirements] to be able to orate at least adequately to a crowd, lets say at least in meetings with their own staff. Unfortunately our current Head has all the charisma of a boiled potato. Not only that but she regularly fluffs her lines, gets so tongue-tied she makes no sense, miserably fails to produce powerpoint presentations of point or appropriate use (she reads 'em to us!), and has even been known to bottle meetings and leave her minions to deliver bad news to us. However, she never fails to turn up to your lesson, grade it according to her 3 page 'tick sheet' and then deliver a verdict on how good you are at teaching [judged on whatever the latest 'buzz-standards' are]. Naturally, as someone who battles internally a far greater foe, when she criticised me I told her what I thought... she just replied "righto, i'll come and observe you again next week." Curses.)

Anyhoo, this week during briefing I was awakened from my usual dead-eyed trance on vaguely hearing the word "toilets". It seemed that on tuesday (that'd be today) the local water company would be doing some work on the local mains which would require turning off the schools supply of water mid-afternoon. This news (unlike all else, which is met by uninterested silence) was greeted by a rubarby rumble of discontent...

'What about the toilets?' someone cried
'Oh, we'll put buckets in there for flushing' (I kid you not)
'What about having water available in case of chemical accidents in the labs?' chimed a canny science teacher
'Errrrrr...'
'What about drinking water for the kids at break?' enquired an english teacher (famed for being a thorn in the side of the old head)
'Oh yes, we'll, er, have bottled water in for them'
'Well, how big is the header-tank?' calls the maddest maths teacher on the planet
'Erm, (she's flapping madly now), OH I DONT KNOW ABOUT THESE THINGS BUT EVERYTHING'LL BE FINE AND NORMAL...'
Cue end of meeting.

On my way back to my classroom, I happened upon one of the deputies. "You know, the school should be closed really" I suggested (just for mischief), and was treated to the most insincere sincerity I have faced for a long time: "Ah, yes. People. Like. You. With medical conditions... good point... phone that across to the head would you." Did he seriously expected me to phone the Head and suggest either a) the school be closed because of my UC, or b) I should get the day off while everyone else soldiered on, or c) ask for a 'Shitbox' for my classroom? I use the word insincere here because, despite outward appearances, this guy is not actually interested in your interests. It is his modus operandi: he's a blagger. But, he only blags himself. He thinks we all think he's a 'great guy'. So wrong. He asks me every day when he passes me 'So, how are things?' It was when he asked me again passing him the other way that it really twigged. It wouldn't matter if I said 'well, my family were massacred last night, so I've been better', because his answer would still be a smoothly ejaculated "Good, goooooooooooooood..."

The resolution of all this? Well, within half an hour there was an email from her headship, the school would be shutting early tuesday after all. Somebody must have pointed out to her that keeping open a building with nearly 2000 people in it (1750 kids, 150+ staff) with no running water or toilet function was not really a good idea...

This Wicked Tongue

2009-06-04T22:05:00.004+01:00

Every day millions of people check their horscopes. They determine their day by someone else's interpretation of the alignment of the stars. They read those little paragraphs and bend the events of their life to fit accordingly. How can all of us be covered by twelve signs? There must be a helluva lot of people all wandering round doing the same things: "putting off an important choice until I'm quite sure I've got all the facts", or "drawing somebody out on the 3rd to discover what I need to know, but not going too far too fast, or saying too much too soon", and indeed "chasing the dream I hold that is now so nearly in my grasp....". Yep, I've got a busy, if enigmatic month ahead.

For others it the mystery of the tea-leaves - Tasseography. Here you stare at the portentous sedimentry contents of your empty tea cup (or indeed coffee cup. Or rather thrillingly: wine glass) and marvel at what the future holds. If you fancy having a go here are some instructions:

After a cup of tea has been poured, without using a tea strainer, the tea is drunk or poured away. The cup should then be shaken well and any remaining liquid drained off in the saucer. The diviner now looks at the pattern of tea leaves in the cup and allows the imagination to play around the shapes suggested by them. They might look like a letter, a heart shape, or a ring. These shapes are then interpreted intuitively or by means of a fairly standard system of symbolism, such as: snake (enmity or falsehood), spade (good fortune through industry), mountain (journey of hindrance), or house (change, success).

Courtesy of: The Encyclopedia of Occultism & Parapsychology, Fifth Edition, Vol. 2 edited by J. Gordon Melton (via wikipedia)

Simple enough. I don't know why we don't all do it. I remember Mrs Mangle did it quite regularly.

Failing that, you could try seaweed (my Grandad swore by it's weather forcasting properties "just nail a bit to your shed...". And yet he was still watching Michael Fish that fateful October with the rest of us, rather than battening down the hatches.), or the colour of the sky: red sky at night, shepards delight, red sky in the morning shepards warning, minced meat and mashed potatoes shepards pie... hoho.

But for me it's none of these portents of doom or delight. Nope, I spend my life trying to read tongue ulcers. Now, I know these things are related to the UC and/or crohns. There are two patterns to mine: a) always on tongue, never on roof or sides of mouth b) I'm sure they date well beyond my first troubles with UC. I don't know what either of these things mean, but it doesn't matter because the occurence of a new ulcer will now and forever cause the following reaction: a continuing spiral of brain-activity mulling whether the appearance of the ulcer augurs a new episode of bowel fun... ad infinitum, until the bloody thing goes. Aswell as this annoying state of mind, those bobbly-little-bastards are truly the most irritating things on the planet. OK, maybe I exaggerate, but mine are always like little inflammed bobbles (like a bigger version of those little bobbly fella's your tongue is covered with) - well thats how they look in the mirror... Of course, in your mouth it feels like you have a blinkin tennis ball stapled to your tongue. I end up continually poking my tongue out and rubbing it absent mindedly like some kind of tongue-lolling deviant. Still, what could go wrong in a school...?

Anyway, I've been plagued by three of them this week. I haven't had one for a while. Does this mean it's all about to kick-off? I tried to take a picture for the blog, but they were super-blurry and rather disconcerting. So, I tried google-image searching. That was truly disgusting... particularly when I stumbled upon the condition: 'scrotal tongue'.

Homeward Bound

2009-05-31T20:41:00.005+01:00

This week has been half-term and so I have taken the opportunity to do a bit of visitin'. What with the wife's ever-changeable shift patterns and the kids, this is never simple. But the planets and the sun were obviously in alignment this week because a little travel window opened between thursday and saturday. Which meant I had the opportunity to tackle the joys of taking UC on the road (ah, that would have been a different book if Messrs Kerouac and Cassidy had to keep nipping off to the loo every couple of hours... Jack would have had to call it 'On the John').

First things first: eating. Well, the old preds are making me tubby round the middle, thin on top and spotty (oh, I know, bloody gorgeous), BUT, they are also making my bowel behave itself. More or less. Is it me or is forgetting what "normal" is in terms of bowel function a common experience: I am sure I have become so used to elements of pain and/or discomfort that as long as I am not pooing through the eye of a needle I'm thinking "yeah, great, everything normal here". Most 'normal' people would be rushing to their doctor: "what the hell's wrong with me?". Ahhh, you've got IBD. Welcome to the world of thinking abnormal is normal. Erm, what was I on about? Oh yeah, eating. Well, my hosts were more than generous in their hospitality and we dined out at their behest and expense both evenings. So, steering clear of my most riviled food enemies (hello granary bread; hello ice cream; hello fruit with skin; hello blue cheese; hello thai food; big hello to booze, and curse you all) I threw my lot in and ate heartily - even eating olives! And as sure as eggs is eggs, I became totally... constipated. Not even one teeny, weeny nugget of the ol' brown stuff deigned to drop by. Now, there have been many times when constipation is by far the better situation to be in; there are even times when I have positively rejoiced at being bunged up, but this was typical of my ridiculously difficult-to-second-guess insides as pre-trip things had begun to loosen up and subsequently I had become quite preoccupied with travelling in that condition. So, for once, the old colon decided to give me a break.

Which, as it turned out, was bloody lucky. For the return trip home was fraught with toilet related difficulties. A colitic obstacle course, if you will.

1. I had rather brainlessly (for a committed follower of the game) booked myself on the most obvious London bound train for the hoards of Everton fans attending the FA Cup final. Fortunately for me the police were there to kill their joy and searched everyone, me included, for booze before we boarded. So they were a subdued multitude. But the train was packed, and some of them were clearly imbibing something because the toilet queues were lengthy for the whole trip.

2. Upon arrival in London, according to my pre-booked train ticket itinery (in order to reduce the extraordinary cost of travelling by public transport I booked a couple of days before online. When I picked up my tickets I was informed I had to travel on the exact trains stipulated - whether they check I don't know, but I've been fined on trains before and it's an expensive business) I discovered I had 35 minutes to get from Euston to Victoria. Plenty, thought I, I'll nip straight across and then get a nice cuppa. I strolled down into the tube, and as I got to the barriers something popped in my brain. I backed up, and there on a white board, hand written in medium sized letters was a notice informing 'Victoria Line closed 30th May". Shit. Quick scoot back to the tube map. OK, Northern Line to Embankment (4 stops), then change to Circle for Victoria (another 3 stops). That's ok, I can make it. 5 minute waits at both Euston and Embankment, get off tube at Vic with four mins till departure, underground packed, start to quicken pace trying not to push, begin swearing under breath, then slightly over breath, why don't people walk in straight lines, holdall in one hand sleeping bag and bag of souvenir tat for wife and kids in other, weave up stairs, into Vic station, start to run fast (recall Steve Martin in Planes Trains and Automobiles), stop for nano-second to check board for platform (16), increase running speed, jiggle ticket out of pocket in smooth in-run bag/hand swapping movement, shove through barrier, dive through train door, train departs... phew.

Under usual circumstances all this would be hot, sweaty, but fine... you know, an accepted part of using public transport in the UK. But, whilst concluding the first leg of my journey I started needing a wee. By the time I got to Victoria I was relatively desperate. Having run across the station, by the time I got on the train it was painful. And guess what. Every single toilet on the London to Brighton train was out of order. ALL OF THEM. So, I had to hold on until I got to Brighton station. And when I got to Brighton Station (at lunchtime on a saturday I might add) the station toilets were... CLOSED.

Thank the gods I was constipated. But what If I wasn't? What if I'd had flare-up whilst away? What if I was a commuter to and from London every day? UC aside, it would have nightmarish if I'd had the kids with me, they always need the loo.

So, hats off to all you UC battlers who use our wonderful rail network every day: you deserve medals. And thank heavens I only live a 5 minute scooter ride from work.

I'm Coming Down

2009-05-28T09:53:00.004+01:00

This week I have been mostly tapering down my steroids and considering the influence of this on their side-effects. For the last two weeks - up until monday 25th - I have been taking 15mgs a day, so that'd be a 5mg taper from the previous levels of 20mg. My consultant wanted me to take this level for one week only and then taper down to 10mgs. However, as is my wont, I have chosen to ignore my consultant and devise my own tapering method. Actually to claim to be devising my own tapering method is a complete load of balls. What I have been doing is heeding advice given to me by my rhuemotology consultant sometime last year. It's nice to be able to still use his advice: I somehow feel he is unlikely to ever want to see me again having redecorated his waiting room, sluice room and one of his examination rooms in a beguiling new colour I call 'Hematemesis' on my last visit.

The gist of his steroid tapering advice is thus: lowering by one tablet, i.e. 5mgs, a week is too much, especially as you get to the lower doses. For instance, 20mgs down to 15mgs is a 25% reduction in dose, 15 down to 10 is 33% and then 10 down to 5 is a 50% reduction. His argument, which resonated with me, was that, just as you are reaching the lower levels of the steroid tapering by one tablet a week massively cuts the levels of steroid in your system. And therefore may upset the bodies levels as it replaces the artificial steroid with its own (or something like that). Now this could be a load of old cobblers but it sounds reasonable to me.

So, this week I am taking alternating doses of 10mgs one day and 15mgs the next, therefore achieving a steroid dose of 12.5mgs overall - a reduction of only about 15% (forgive the shoddy maths). This I will continue for another week after this and then reduce to 10mgs. This will involve seeing my GP in the meantime because to make this slow tapering work I need more preds than I've been given.

Interestingly, this week as the dose has been lowered I have seen an increase of:

Spots. Curses. Shaved the blinkin beard off too, so I've got nothing to hide them under... Strangely they seem focused on my nose, which is rubbish (and, one has to note, would not be hidden by a beard. Unless I was some sort of wierdo. Which I'm not. Well, not in that sense anyway), and continue their dominance of my scalp. Honestly, it feels like braille up there...
Roid rage. Yesterday in particular I spent the day with a knotted ball of fury growing in my stomach. Unfortunately, as usual, it manifested itself in me being snappy at the family, and nearly erupted in the cinema (took boy 2 to see Coraline in 3D) due mainly to a huge number of imbecilic adults talking/walking about/reacting to a film for kids as though they were children themselves... grrrrrr

Which leaves me wondering; is it the steroids themselves that create these side-effects or the changing levels of prednisolone and my own bodies steroids, i.e. it doesn't matter much about the size of the dose, more influential are the periods when the dose changes. (there needs to be a ? somewhere in that sentence, but I can't work out where, sorry. I'm going to stop thinking about it before I get angry with punctuation...)

One day Goodbye will be Farewell

2009-05-23T17:40:00.002+01:00

Man, what a week. Physically tiring and emotionally draining. Not enough time to even think about UC. Which is a good thing. Except that, if I haven't got time to think about the UC, that must mean I'm working really hard. Which, to be brutally honest is the very antithesis of my nature... I'll admit it: I'm an idler. I remember my wife once chastising me upon returning home to find me sat in the very same place (on the floor on some scattered cushions, in our unfurnished semi-decorated conservatory (which is pretty much how it remains after several years)) as I had been 6 hours earlier, the only signs of movement having been a pile of used tea bags... Well TMS (thats Test Match Special for those of you who are not cricket lovers) was on the radio...

Is it just me, but having just re-read that paragraph there is something slightly suspicious sounding about the phrase 'a pile of used tea bags'...?

Anyhow, this week, it's been a belter. First of all the deadline for year 7 reports was friday. I have 4 year 7 classes this year, so thats 120 students (approx). Now my union recommends around 50 words a student (I think) which would mean: 6000 words! Half a disertation. And of course I've left them to the last week. As usual. Thank god for modern technology is all I can say. Blimey, back in the old days I would have had to hand write them all! Not that I'm suggesting I would rely on, say, cut and pasting these days you understand.

Apart from that it has also been the week that year 11 finally leave for study-leave. They don't get all those empty weeks before the exams like we did back in my day (revision or beach? revision or beach? revision or beach? beach beach beach Yay!). Oh no. In fact the exams have already started. Now this is a fraught time because to begin with I am always desperately trying to revise as much of the course as possible in class with them before they go. Precisely because I know once they are out of my clutches (like me before) they will do bugger all. And secondly, because I always end up very fond of my GCSE teaching groups - its bloody sad to see them go. And thirdly, this year, my form group are also in year 11, so they are off too. Which is even sadder. I've only had this lot since year 9 (my last form I took from year 7 to 11, it was like waving goodbye to my own kids... sniff. I bump into them around town now and again, some of them even greet me with a hug!), so a couple of years, but I have grown very attached to them, and, I think, they to me. So, as I say, there is a lot of hard work and worry, and a lot of emotion (not to mention all my other classes, year 10 coursework, the reports, my own kids etc etc).

This whole week is rounded off by soemthing called Record of Achievement (RoA), something that also didn't exist in my day. Basically a big, formal, send-off for the year 11's in the local town hall in the presence of the whole year group, senior management, governors, parents of all the kids etc. Essentially they all recieve a folder (their 'Record of Achievement) containing all the certificates they have garnered through their school life, plus CV, personal statements and so on. (Right, I too realise that it won't contain their GCSE certs, and that they haven't even done them yet, and yeah, september would seem a much better time to do this kind of thing - but, hey, I'm just a classroom teacher - what do I know?). Anyway, they get those, plus loads of the kids get subject and sports prizes, there are some speeches/reminiscences by staff and kids, then a buffet and mingling afterward. It's a mixture of dull, blinkin lovely, very happy, and lump-in-throat stuff.

It's about here in the week where the UC starts to rear its ugly, unwelcome head. Because as tutors we are expected to do a speech, about our forms groups. Now, many people think because I'm a teacher this is easy. But: a)some people do short little off-the-cuff (perfectly reasonable) 'you've been great' type speeches, but I HAVE to try to make mine funny and mention them all, b) standing on a stage in front of about 300 students plus, say, 250 parents is absolutely arse-sweatingly, ball-shrivellingly, UC triggeringly TERRIFYING. So I wrote a speech. Went to the toilet about 4 times before my go (I was near the end). Delivered the speech, desperately trying not to think about, or accidently say something about pooing myself on-stage. And was delighted to hear much laughter along with my gags, as opposed to the deathly hush of a hall full of people watching a man uncontrollably poop under a spotlight. And then it was over. And there was a great deal of hugging and hand-shaking, and thankyou's and goodbye's and... then I went home. And, although I'll see them all again around school as they do their exams, it leaves you feeling pretty weird. The only comparison I can think of is when my wife described that feeling you get having finished a really good book, where the characters in particular really pull you in. A sort of hollow, empty, yearning feeling. Because they're not my kids, but I've seen them every day, every morning, for the last 3 years (and 5 with the previous form), and I've had a real laugh with them, and I've told them off loads of times, and I've helped them/failed to solve problems, and I've shouted at them, discussed serious issues with them, given them advice, played jokes on them, had jokes played on me, shared good times, sad times, happy times... and now they're gone. On with the rest of their lives.

And I'm knackered.

Baby, I grew you a beard

2009-05-15T21:43:00.006+01:00

Unsettling facial hair photo of the week:

Holy cow, that steroid beard's got thick all of a sudden...

Paper Tiger

2009-05-12T16:08:00.007+01:00

I'm not one to rant... OK, that's a total, utter, preposterous, fabrication. Ranting is both my release valve and my joie de vivre. My raison d'être, if you will. Enough french though, for ranting is what I am about to do...

Now, far be it from me to denigrate any level of work or employment. Indeed, I have been the holder of many an unfulfilling, even depresssing job. Yes, I've made the triangular boxes that sandwiches come in (didn't last long at all in that one). Yes, I've stuffed envelopes (met Labi Siffre doing that one). Yes, I've been a barman in a horrible, violent pub (sacked). Yes I've worked at M&S (sacked after 3 weeks). Yes, I've been a florist (er...). Yes, I've emptied sacks of mail at the post office all day (technical name - 'Tipper'). Yes I've been a cleaner, both in an office and a secondary school (the lowest point on my own employment journey). And yes I realise there are a thousand worse jobs out there than those few examples, and yes I realise that many people are both lucky and thankful to have a job, any job. And no, I dont think any single one of those is less worthy than anything that I do on a daily basis.

However. I am really struggling to have any respect for whoever it is who cleans/maintains the toilets at school. Not the students loo's - god knows anyone who has to go in there deserves a bloody medal (usual ambient odour of girls loo = fags, usual ambient odour of boys loo = indescribably disgusting smell of a floor soaked in piss for 30+ years... really don't even try to imagine it). No, the person who does the staff toilet. This person is a BLINKIN BUFFOON. I'd like to make it clear that I have self-censored myself there.

It's not the cleanliness, though that ain't great (but I put that down to having to share with other males, we're barely above animals when it comes to watching what we're doing. Or indeed, cleaning up after ourselves. Except me of course). Its the goddamn toilet roll that is riling me. Well, the toilet roll dispenser to be exact. This thing:

(It's called a 'flat-pack toilet roll dispenser' in case you were wondering - I've just spent about 30mins google-image searching for the correct one. I never realised there were so many! There's a whole industry out there...).

The guy who refills this is an idiot. Every single time I use this toilet I have the same problem. Every other day, morning or night (I dont when he does it) he does the same thing. And it must be done with planning, which makes it even more enfuriating. He clearly see's it as a time-saving strategy, so that he doesn't have to fill it every day. He pushes in as many of the tissue refill packs as he possibly can. 'Ahaha' he must think, 'how clever am I? I wont have to come back to this baby tomorrow...' Well you're not clever. You're a pillock. You've pushed the tissue in so hard it wont come out the little slot at the bottom. No. Everytime I pull a piece it just tears. Little strips of loo roll the size of the end of my finger. Or at best, feathery strips a few centimetres long. So that I'm having to ball them up and try to wipe my BOTTOM WITH A STUPID BALL OF LOO ROLL, LIKE SOME KIND OF CRAZY WEIRDO, WHICH SOMETIMES, WHEN THE UC IS BAD CAN TAKE BLOODY HOURS AND LEAD TO ALL SORTS OF UNWANTED FINGER-RELATED UNECESSARY-NESS. STOP IT, FOR GODS SAKE!

So today, after school I went in there and stuck a post-it note on the dispenser. Then imagine my smugness dissolve when as I left school I witnessed one of the deputy heads coming out. Thank goodness I didn't sign it.

Strange games and funky things

2009-05-11T16:32:00.003+01:00

Even when you are fully, physically committed, to competition and enjoyment, UC is never far away. On Friday, after school, myself and a selected group of the Staff Football team travelled into mid-sussex to play in an inter-school staff 6-a-side tournament. I was disignated kit-man for this outing, and duly arrived last with the nicely washed and ironed Yr11 team shirts - thats what PE detentions are made for: washing kit... It is always at this point in preceedings when much comment is passed on the current state of male adolescents, as in: What the Hell do they eat? They are all massive. And consequently, so is their kit. Which means much swapping around of shirts, until those of us who are 'smaller' (I'm sure 5'11" and 12st hasn't always been considered small... maybe I've just got a bit of a complex) have managed to get a shirt that doesn't completely cover our shorts. Once kitted up we strode out onto the pitches (nice all weather pitches - much better than our school!) to take in the opposition, 10 teams in all.

There was the usual mix of schools who turn up purely for the fun, with enthusiastic and willing players, schools who have a mix of players of ability and enthusiasm (that's us), and then those that clearly are there for the glory and ring in 6th-formers, county level players and the odd non-league semi-pro (2 were counted on friday - and they're always the dirtiest, playing every game like it really is more meaningful than the broken plastic trophy that has been the prize for the last 3 years...). Our objective this year: get through the group stage and go home heads held high.

Well, we exceeded expectations. With a killer combination of some very good play, gritty determination, last-ditch defending and plenty of hilarious distraction (I give you our first goal: conceded when we were a man down because our sub couldn't get the top covering his strip off - it got stuck over his head - and I stopped to help him... well, he was supposed to be coming on for me. An inauspicious start), we actually progressed from our group as unbeaten winners. We then lost the semi-final on penalties, but won the 3rd/4th place play-off easily. So, all great... But....

There's always a 'but'. During the group phase I was clattered by a fella on another team - not unfairly, just very hard. Fortunately I always wear shin-pads, I have learnt this is a must with my condition. In fact, much to the hilarity of my team-mates my (as-yet unpatented) leg-protection-system includes: one pair of ankle high socks, one pair of doubled over tubular bandage from mid-foot to knee, one pair of shin-pads, one pair of football socks - I feel like a knight preparing for battle. I should have some sort of squire to put it all on for me... Nevertheless at the end of that game I had to check the damage; my wife's last words ringing in my ears "don't get injured". It is these knocks that have so often lead to my arthritic UC symptoms rearing their ugly heads. It was right under my shin pad but there was still a nasty whelt and little early inflammation. This gets into your mind. So I spent a good deal of the rest of the games thinking about my leg. Between each game I was examining it obsessively. I kept rubbing it all the way home. I spent all evening looking at it, trying to determine if it was getting bigger. It grew by about double by bed-time. I lay in bed wondering how big and painful my leg would be by morning... I spent more time and energy scrutinising an 10cm square patch of bruised skin on my shin for those 8ish hours than could ever be considered normal or healthy.

As it happens, it had reduced by morning (at this point I should make my doctors usual disclaimer: that's because I'm on prednisolone), so by midday saturday I had stopped stressing about it. Stupid disease.

I reduced the prednisolone by 5mgs this morning. Now on 15mgs a day.

Drive in Saturday

2009-05-03T19:53:00.003+01:00

The Saturday routine.
Woken up by Lovely wife at 6.30 with a cup of tea.
Joined in bed by son no. 2.
Drag myself out of bed and neck cuppa by 6.45, pulling yesterdays discarded clothes back on.
Try not to grunt too negatively when bid a chirpy good morning by lovely-wife upon reaching the downtairs.
Out to car, drive to hospital.
Not for me! Lovely-wife working, (NHS long-day shift: 7.30 start, but expected to be there by 7.10. And 8pm finish, though paperwork often extends this to at least 8.20 - Yep. That's a 13hour shift. And she doesn't often get much more than a vague lunchtime in the way of breaks either).
Drop her off, drive home, stopping for a paper on the way - I pass about 30 newsagents, but always stop at the same one. I don't know why.
Get home to be be confronted by son no.1.Now he is just knocking on 13 years old, so if he is up at this time all initial conversations are fractious affairs...
Rustle up the kids some breakfast - if I don't do this son no. 1 will not have any. Out of laziness...
Begin my second cup of tea and settle down with the sports pages. One of the redeeming aspects of taking lovely-wife to work on a saturday is being up early enough to read the paper without feeling guilty. Obviously reading the paper (saturday is the only day I manage) is something I have only recently been able to return to, as the kids have reached an age where they do not need entertaining by me all the time.
If I am lucky the boys might entertain themselves adequately right up until 10.45 when we often go swimming. Which means I can read almost all of the paper!
This is always accompanied by several further cups of tea. My name is rich and I'm an addict.
The rest of the day gets made up as we go along...

But this saturday... About 10ish, am reading paper and enjoying 3rd or 4th cuppa whenthe phone rings. Son no.2 answers. I can't hear him, so assume it's for one of them (I really recieve the least phone-calls in this house. By a massive margin. Son no.1 uses it so long for so often, he frequently runs the battery out on the handset. Usually just before I do get a really important call...)
Son no.2 appears, profering me the phone: "who is it?"
"Dunno"
"Did you ask?"
"Some man..."
I take the phone (aware that 'some man' has been able to hear our brief father-son interaction).
"Hello...?"
He replies. I recognise the voice immediately. It's my consultant. So surprised am I that I spring up! Like a naughty boy caught on the hop.

I shouldn't be surprised, seeing as I finally left a message for him, via his secretary, on friday afternoon. But I never expected him to phone on a saturday. I thought he'd be at the golf club. So, that's another ill-founded judgement I'll have to alter. Don't you hate it when people exceed your expectations?

The upshot of our conversation was that he agreed with my suggestion that I don't want to try anymore new meds for a little while - 3 failures in 2 months is enough for now. And that I could go for a slow taper off the preds, down to nothing with no other drugs! You know, just to see what happens. This should coincide nicely with my next appt in clinic in June. But, the main thing he said was: if I continue to have problems he is going to send me to London to see a colleague who is an expert in UC, at UCH. Wow! That is really good news. I am going to really have to reassess my opinion of the old bugger. I looked this new guy up on the net, he's there! And he's written loads of papers about UC! And... well I didn't find much else out, but at least he's the real deal.

After that, the sun was out, so me and no.2 went down the park with the football. No.1 wouldn't budge off the sofa...

Almost cut my hair.

2009-04-28T18:14:00.004+01:00

I should have phoned the hospital last friday. But, I didn't. I should have phoned the hospital yesterday. But, I didn't. I should have phoned them today. But, I haven't. Why? My, thankfully short-lived, drug-induced flare-up has settled down (touch wood. Not cloth.). My consultant wanted a week-on update from when I spoke to him mid-flare on friday 17th April. His advice at the time was to stop he salazopyrin and stick with the 20mg of prednisolone. So, now I'm just on the pred and all is well in colonville. So far, so good. But I know a call to the hospital will trigger a new appointment. And we're running out of drugs to discuss/try. And they're going to want to talk to me about coming off those preds.

Now, by my reckoning, it's been about 1 whole year of being on prednisolone. I had taken them a few times before (see May 08),over the previous 5 years, but this is by far and away the longest stint. It seems to me that people's reactions to this drug differ dramatically - clearly that depends on dose and length of use - so how am I doing after a year?

Beard

For me, prolonged use always precipitates the growth of the beard. I don't mean that I benefit from some kind of super-facial-hair-growth induced by the steroids. Sadly, the beard appears through personal vanity. It hides the inevitable steroid acne. Well, most of it. On my face. It's a hard decision: beard or acne? But after many years of pondering, the beard has won out.It looks something like this (pretty poor I'm sure you'll agree...)

And, yes, I am a geography teacher too...

Hair

Other than facial. This is weird: a few months ago (maybe 10 or 11) it started to fall out - or seemed to be falling out. When I washed it there would be far more hair in the shower than normal. Was it the steroids? Somebody (IBD Nurse) once told me that UC could lead to hair loss... but I've never read/seen that anywhere else. Anyway, it stopped. But now it has started again. And my hair's a bit longer, so I notice it more. There's still plenty left, so I'm not unduly worried. Yet.

Rage

Used to happen alot - days of choking back a huge knot of bilious rage burning inside me, literally looking for someone to start an argument with. Or taking it out on the wife and kids (just general shouting, no violence or anything). Nowawdays it comes and goes. Most of my friends are used to me ranting anyway, so this is just added amusement. The family don't have to suffer too often any more, though it does get the wife down sometimes. It is really very difficult to control. A couple of weeks ago I went into M&S to buy some pants. They are always all packaged up which makes it very difficult to judge how comfy they might be. So, I unpacked some to have a closer look. Whilst inspecting I noticed I was being watched by a very haughty looking M&S woman. She was probably well within her rights to keep an eye on the bearded weirdo unpacking pants but, before I could think the rage boiled, the red mist descended and I found myself thinking "COME ON THEN BRING IT ON COME AND HAVE A GO AT ME COME ONNNN..." and feverishy unpacking several other packs of pants... Fortunately the wife was there to drag me away before I had disappeared under a pile of tasteful boxers.

Shakes

Another symptom that comes and goes. On the whole this doesn't bother me. Until somebody points it out. Then I feel like some old gimmer...

Moon Face

I think I've got away without this one so far... Oh god, why did I type that?

Weight-gain

This is difficult to judge. Firstly, it is unclear to me whether steroids make you gain weight through water retention or increased appetite, or both. My usual healthy weight is about 12 stone (i'm 5'11") and I have pretty much flucuated around this mark for the past year. I lost a lot of weight when I had pnuemonia last feb, but got it back and have kept it on bar losing a few pounds here and there to the UC. This has perhaps helped to hinder any massive steroid ballooning. God knows that I have felt the effects of appetite increase. There have been days when the only thing stopping me eating everything in the house is that I have eaten everything in the house. One benefit of being on the steroids all year is that I haven't had much problem with the arthritis, so I've been able to play football much more regularly.

Those are the main side-effects in my steroid world. And this is the problem. If you ask me day-to-day which I would rather negotiate, symptoms of UC or the side-effects of the prednisolone, to me it's a no-brainer. If i could just get it down to 5 mgs a day again...

If I have to go.

2009-04-24T22:10:00.003+01:00

Once again my ludicrous internal workings bemuse and befuddle. Tuesday morning I saw myself off to school with a parting shot that was no more than a 4 on the stool charts (the shit parade, if you will...) and spent the rest of that day with that old nagging fear, waiting to make some convulted excuse to leave a class unattended, or hurridly negotiate with a TA (teaching assist) over leaving them in charge (lots of them don't like that - beyond their job description or something), and leg it to the loo. But... it didn't happen. A happy uninterrupted day. And then another (cramps subsided completely). Then another. And, indeed, another! In fact, I haven't been to the loo since that tuesday morning!? And because I was feeling better I have been eating more or less normally too. Which just leads me to wonder: where the hell is all that food? There can't be room for four days worth of food in there surely? Still, it sure beats the alternative.

The first week back has been relatively painless. In fact, many colleagues have been more than sympathetic in their concern for me - absence gets your name on the cover board, so the whole school knows straight away. Many people stopped to ask how I was as most either know about the UC (I'm such a BORE!) or my spells in hospital last term. Which is very nice. One senior colleague even stopped me to have a chat because she had been recently diagnosed with crohns. It felt good to be able to offer a little advice. I definately think it helps to be open about what's wrong with you.

So, to celebrate the arrival of the weekend we popped out for dinner with the boys. We decided to try a new Jamie Oliver restaurant that has just opened in Brighton. Excellent food, good for kids, and very reasonably priced considering it's trading under a 'name'. But most important of all: lovely toilets. OK, it's new, but nevertheless I had a little look in the cubicles when I went for a wee, good solid doors, no gaps at top or bottom, exceedingly clean, lovely old antique-looking porcelain bowls with a victorian style cistern and flush. Somebody really put some thought and care into these babies - thanks Jamie. Shame I couldn't muster anything up to deposit...

Its a mystery

2009-04-21T19:46:00.009+01:00

So spake the Incredible Hulk (my GP) this morning when I filled him in on the details of my most recent failed relationship with medication. Which was putting it mildly I thought. However, he went on to prove his worth, and prove why with UC you need a good GP.

First of all he listened with convincing interest while I spouted on about how I was fed up with being some kind of medical mystery, the colitis conumdrum if you will, whereby all medical treatments for this blinkin disease make me more ill. Except the one I'm not allowed to take for long periods: prednisolone.

Secondly, he again listened and also made very supportive noises as I outlined why I don't want to succumb to surgery yet, and how I plan to make this argument with the hospital. He was willing to discuss with me the con's and pro's of taking prednisolone for a further few months (tapering slowly) without just intoning "BAD MANAGEMENT" or "TOXIC MEGACOLON" or "YOU'LL GROW A HUMP" or whatever other frighteners the hospital throw at me when I try to have the same conversation with them.

And, thirdly, he said things like: "You don't have to have surgery if you don't want to", and "I will help you get the treatment you want", which not only represent the kind of support you want and need from a doctor, but also empower you when taking on the mighty consultants at the hospital. He has given me confidence in my ability to take the initiative in future decision making. Which, to be fair to me, I was pretty determined about anyway, but it all helps.

After that it was the first day back at school, which joined forces with the colitis to remind me of the potential this illness has to entrap you. I had cunningly arranged the doctors appt at 9.50 to allow me maximum comfort in returning to school today (missed two lessons), so was able to get ready at a leisurely pace having seen off son 1 and son 2 + wife. During this period I had some mild cramps, bit of wind and then a relatively healthy poo - a definate improvement again, putting beyond doubt the thougt that this flare is anything other than a reaction to the salazopyrin. So I stuffed some spare pants into the bottom of my bag (see Number Twos for a far more impressive Kit and discussion), and just as I was about to leave I got a little bit of pre-school anxiety (I mean pre-school as in 'before' school rather than I suddenly became anxious of toddlers): maybe the flare-up will suddenly get worse at school... Cue a little shiver down my colon, followed by a cramp, followed by a dash to the loo. And so as I sat there I thought: the combination of colitis AND the fear/anxiety of colitis AND the physical manifestation of fear/anxiety could keep me trapped in the house for a very long time...

Another one bites the dust.

2009-04-19T11:42:00.002+01:00

02.20am Friday morning, sitting on the toilet in the dark and a thought enters my head: 'What if the consultant gave me these pills because he knew they'd cause a flare-up and then he'd have another arrow in his armament for the next round of the ongoing conflict Rich vs Surgery. Ha! Well, I'm not going to give up that easily... oooooooooooo that hurts.......'

Yep, sadly the Salazopyrin has gone the same way as mesalazine, azathioprine, and 6MP before it. With remarkable efficiency it reduced me to housebound toilet dweller:

Monday 13th (er, perhaps a bad choice?) - took pill 1 (plus 20mgs pred).
Tuesday 14th - disturbed in night and for most of next morning by bio-hazardous levels of wind. Took pill 2 (+ pred)
Wednesday 15th - distinct reduction in wind level. Distinct increase in visits to the toilet: 4 between 7am and 11am, then none for rest of day. Took pill 3 (+ pred).
Thursday 16th - wind levels almost normal. Visits to toilet increasing now with the added pleasure of cramping and marked reduction in consistency, we're talking no.6 on the stool chart people. Took pill 4 (+ pred).
Friday 17th - On toilet repeatedly between 2am and 11am, levels of consistency have dipped well below no.7 on the Bristol stool chart (yep, that means 'entirely liquid') and are showing distinct signs of blood, cramping has risen to that double-you-up degree of burning that makes me want to pound my head (is it just me or do other people have the oft-repeated fear that they are going to have some sort of rectal prolapse when on the toilet in a UC situation? I have even formulated a plan in case it ever happens). Following my ridiculous (or is it?!?) paranoid thought outlined above, I decided at this juncture to knock the salazopyrin on the head. At least until I had spoken to the hospital.

I have to say, and this remains my main reason for being so against surgery at the moment, that this has been the worst flare I have had for some time. I know I've been on low levels of pred for along time now and even then there has been occasions when something's been going on down there, but the last two days have reminded me how bad things can get. I am very good at blanking out the worst episodes of UC. But, the things we go through are actually bloody awful and any semblence of normal, everyday life, we achieve is testament to our blinkin courage and determination. In the last 2/3 days I have been in absolute agony at times, leave the house with utter trepidation, have eaten hardly anything (its hard to shift the mental attitude that not eating will help), slept really badly, whilst at the same time being absoltuely wiped-out knackered, totally lacking in energy. I can't even fart without both metaphorically and literally shitting myself.

However, some improvements have been made. I spoke to my consultant on friday - he even apologised (maybe there is something in my conspiracy theory after all...) - and he agreed that I would have to stop the salazopyrin and delay tapering preds. He wants me to phone him back in 1 week with an update. I took the last salazopyrin on friday morning. I'm still cramping, but already there has been a reduction in visits to the toilet, once so far today, and an increase in consistency (definately no.6 in this mornings only output so far - what I like to think of as a 'thick shake') and, prod around as I might, I couldn't find any evidence of blood. Which on the whole would suggest I got off lightly. But there do remain 2 problems:

1. Still on the preds... Perhaps it's time to start researching 'altenatives' again.
2. Term starts tomorrow (this is the last weekend of the easter hols) - I really would like to give it another day before going back to school. A classroom of 30 kids is no place to be when the cramping and urgency start, I know: I've been there a thousand times... I need a little more piece of mind, a full day or two of clearly reduced symptoms. Of course, teacher holidays annoy most people as it is, but a member of staff who doesn't come straight back to work after two weeks off even pisses off other teachers! Ho hum. Good job I don't care...

News of the world

2009-04-16T10:37:00.002+01:00

An old joke:
A man wakes up in hospital in his ward bed with the curtain pulled round. It opens and in strides his surgeon. He leans over the man:
"Ah, Mr smith, you are back with us... do you want the good news or the bad news?"
"Uh... the bad news?"
"I'm afraid, Mr Smith, we were unable to save your leg, I have had to amputate it."
"Oh my god! And what is the good news?"
"Ah, well, the good news is that Mr Jones in the next bed wants to buy your slippers..."

The good news: Last night and this morning I have had the pleasure of being considerably less windy. Almost normal one might suggest.

The bad news: I have been to the toilet 3 times already so far. Extreme looseness and some cramping. No blood as yet.

So, what is the plan? Well I've already taken todays single salazopyrin tab (and 20mgs of pred) so not much point in urgently rushing into action - I remain intent on being patient, maybe this is just teething trouble, but it is getting difficult.

Tomorrow I will phone the consultants secretary and get some advice from good old Dr Cairns. I cannot do this today as in a moment I have to drive west to Portsmouth to pick up my nephews - you can lay your last pound safely on the chance that the hospital will phone while I'm out. I will entertain 4 children today (although to be honest my eldest will probably blow this joint. Once I can prise him into the shower...) and then tomorrow I will let them run riot while I sit by the phone/on the toilet. The goodlady is at work today and tomorrow, so it could be an interesting couple of days!

Of course, I am going to have to carefully time the drive...

Something in the air

2009-04-15T09:49:00.003+01:00

To borrow a well used phrase from the kids at school: Oh. My. God.

This morning I awoke at about 7ish, got up and stumbled to the bathroom as is the norm. Emptied my bladder and blearily returned to the bedroom. As I opened the door and stepped in I choked upon the thick fug I'd unknowingly been creating throughout the night. You could have cut it with a knife...

Yep. The salazopyrin gives me wind. Enormous, endless, milk curdling, death-inducing wind. Gas that would not have been out of place in Vietnam - Agent Brown. This is the second night/morning running, with no discernable changes in diet. It has to be the salazopyrin. Of course the trouble with wind in the UC sufferer is our reluctance to let it out. Dare we? Every release involves such a carefully controlled relaxation of muscles, always ready to tense in an emergency. It is this that lead to a sleep free night Monday: just as you're drifting off... the anti-follow-through alert kicks in. Not so bad last night, I think I was knackered.

My wife says not to get downhearted. She thinks its just my body getting used to the meds. She thinks it'll settle down. I want to believe her. The problem is I'm only taking 1 tab a day at the moment. I have to build up to 4. If 1 tab does this, I fear 4 may cause some sort of explosion. This mornings toilet experience was a little looser too. Boo.

I've checked the drug notes - no mention of flatulence. So, does anybody out there have experience of salazopyrin? I know we're all different, and god knows these drugs they give us are hit and miss with no consistency between patients, but I'm hoping somebody can offer a thought...

Chocolate Jesus

2009-04-14T09:39:00.008+01:00

This morning I was reading the Bible. A rarity, but I was trying to find out the 'facts' about the Easter story. Basically another excuse to go off on one of my tortuously tenuous analogies. I was trying to suggest that I took inspiration from Jesus when I finally started the Salazopyrin yesterday, Easter Monday. Some sort of doubtlessly blaphemous linking of my finally getting up the bottle to start these drugs and Jesus' resurrection. Unfortunately Jesus' rise from the tomb was on Easter Sunday of course, a day on which I was still prevaricating. As it happens, it seems he didn't do much on Bank Holiday Monday at all: he appeared to the Disciples on the Sunday evening, and then again a week later - presumably he was reacquainting himself with Dad, and maybe getting in a couple of jars with the Holy Spirit. Interestingly, when he returned the second time, to prove himself to 'doubting' Thomas he made him put his hand into the wound in his side that the Romans had inflicted! Not: "Do you remember that funny mole on my back?", or "You are Thomas of 34 Acacia avenue, married to pauline, you keep your spare cash in the jar on the mantle-piece and your favorite biscuits are custard creams..." or even "Bring me a loaf!", but "Stick your hand in here...". Maybe if I have to have the old colostomy, when I return to work I should prove my existence by getting people to stick their fingers in my stoma... Sorry that is really gross.

Anyway, twas on easter Monday that I finaly began the Salazopyrin. Here is the delightfully orange little chap:

I took the orange tab, 20mg's of prednisolone and a tab of Adcal3, which I guess is not much really. However, the psychologoical power of the orange one is massive...

In order to divert my feeble brain from the inevitable fixation on the impacts of this pill and because it was a beautiful day, we decided for a family walk somewhere on the South Downs - get some country air. So, we jammed the boys into the car and got out of the city.

Here is a pic of Devils Dyke - a must-see part of the South Downs for every UC sufferer I always think, as it reminds me of a massive bum crack in the very Earth itself.

Anyway, it worked. And to celebrate my 'bravery' we had a home-made Balti for dinner. This was followed by a sleepless night where I lay awake unable to muffle the sound of my intestines gurgling, gasping, sighing and basically whining. This morning I rose at 6.30 to take my wife to work, to the most uproarious flatulence I have had since I stopped drinking. As it used to say on my whoopie cusion: 'A real bronx cheer!'

I have yet to decide if this has been down to the salazopyrin, the curry, anxiety, or a mixture of all three.

Heartattack and vine

2009-04-11T13:03:00.004+01:00

I still haven't started the Salazopyrin. I'm a yellow-bellied chicken. Buk, buk, buk, buukkkukkk (this is how you type out a chicken noise. I know, I asked one). To be frank, it really is because I am scared. I am worried that it will make me ill again. The side-effects include suppression of white blood cells, which is clearly similar to immuno-suppressants, and so after my recent unpleasant and abortive experiences with those lovely fella's, I am somewhat reluctant. It would seem my liver function could be better - this is why it struggles to metabolise 6MP and azathioprine. According to the drug blurb there is only a 1 in 700 chance of my liver going wrong. I'm not a betting man, but if I were... well, I'd have a little flutter on me...

Also, and perhaps the real elephant in the room, is this question: what happens if they don't work? I am worried about having to cross another option off the list. I feel like I've just given surgery the slip. I feel good. I feel well. I know I'm still on the preds - toxic megacolon and all that - but... What are the alternatives? What else is there? Drugs? Alternative therapies? Magic? Voodoo? Nothing? Anything?

Then, yesterday I went out the front of the house to box up the recycling and my nextdoor neighbour came out to do hers. It's a regular 70's street, ours: everybody knows everybody, we all look out for each other, I'd swear if there was a coronation or jubilee, we'd have a street party (just like those hilarious sepia tinted pictures of me dressed as a pack of cards(!) from '77. My brother was a dice... good use of boxes Mum). But next door are quite new and I don't know them all that well. She was aware that I'd been in and out of hospital recently an so kindly asked after me (actually a very dangerous prospect - I can go on. And on. And on). We had a little chat and she asked me what drugs I was on:

"Salazopyrin, but I haven't started them yet, and prednisolone."
"Ahhhhh, salazopyrin. My dad was on them for a long time"
"Really?"
"Yeah, he has colitis too"
"Riiiight. How is he now?"
"Well he had it terrible for years and years. Did all the drugs he did. We used to drive down to Italy every summer, he'd have to stop 20 - 30 times to rush to the loo. We used to think it was ever so funny" (at this point I did one of those polite laughs and nodded in agreement - poor bugger) "but now he's fine."
"Fine?"
"Yeah, still needs to go to the loo every now again"
(me, nodding with fixed smile)"yeessss, ahem, don't we all..."
"Gets worse when he gets nervous" (probably when he gets in the car with the whole family)"but most of the time its not a problem anymore"
(now I'm listening)"Really?! Why? How?"
"Well, he started brewing his own wine"
"Er, yeah... annddd..."
"That's it. Made his own wine. Started drinking it regularly. No more colitis."
In my head I was simultaneously shouting "WHYBUTHEBUTSHEBUTTHEYBUTBUTBUTBUT" and "curse you God; you made me give up drinking, but I should have been MAKING MY OWN!"
But I think I just stood there flapping my mouth around until she went back indoors.

SO. If salazopyrin does not work. It's on to homebrew. I'll have to get the recipe.

Doctors and Dealers

2009-04-08T14:27:00.003+01:00

Three points of interest today.

Firstly, I went to see my GP to discuss hospital plans and get prescriptions for prednisolone and the other stuff (cannot remember the name of it at all). Noted, not for the first time, how much my GP reminds me of the Incredible Hulk. Not the drawn charcter from the Marvel comics, but the old 70's TV version played by Lou Ferrigno. This chap:

He's not green, and clearly does not conduct his consultations just wearing a pair of shredded pants, but he has the same square face and bulky, gym created body. Perhaps he stood too close to the X-ray machine in med school. Whatever, I try not to make him angry...

Secondly, I went to the chemist (again - they eye me suspiciously, perhaps rememering the massive bag of drugs I brought in yesterday...)to pick up said preds, and I encounter two note-worthy things:

2.1 (I'm sub-dividing the the chemist based observations to ensure it adds up to the promised three points of interest) - my steroid prescription was written up to indicate the tapering I have to do as I increase the dose of the other stuff, the target being to stop taking them. With this in mind then, I was amused to find the chemist insisting I take a 'steroid card' - a card to carry about your person in the case of a medical emergency, thus informing paramedics, doctors etc that I am on steroids which must not be stopped immediately. This was a source of amusment because a) I have been on them for a year or so (plus several other occasions in the past) and nobody has ever even mentioned this card to me, and b) they just printed out a label that clearly shows I have to taper the dose, i.e. I'm about to stop taking them. Doh!

2.2 You can get sugar-free methadone! Whilst waiting I listened in to the pharmacists converstaion about what was in stock. There was some consternation that they had run out of sugar-free methadone and only had the the good-old sugary version left. Surely, surely, people trying to get off heroin don't care whether their methadone is calorific or not? Or are they worried about their teeth?

Chemical World

2009-04-07T17:50:00.007+01:00

I chickened out of starting the new stuff.

But I did sort through my gargantuan pile of unwanted drugs, in order to return them to the pharmacy from whence they came. Here they all are:

Hmmm, that seems quite a few. And includes:

The Evil mercaptapurine ((6MP). Now, I kept the information leaflet for this one (I know, I'm mental). It says: "This belongs to a group of medicines called cytotoxins (also called chemotherapy)." Yep. Chemotherapy. Bloody Hell. No wonder 1 dose made me ill. In the 'What is this drug use for' section it only mentions leukaemia. Nothing else. That is serious stuff.

And also:

The only-slightly-less Evil Azathioprine. This one took just over two weeks to put me back in hospital. Ahhh, a week in the MASU behind A&E... lovely. I haven't kept the info leaflet for this one, although I'm pretty sure it at least mentioned IBD's as diseases treatable by this stuff. I'm told they don't use it in the States any more though. They go straight to 6MP. Erk.

Anyway, back they all go. Wonder what they do with them?

Knock on Wood.

2009-04-06T19:36:00.003+01:00

I've had 3.5 days of carefree living. Thursdays fillip at the hospital has been an enduring one, for two main reasons:

Forgive me, but right now, I dont need surgery - I'm not gloating, but I am still enjoying typing that.

I have been put on Salazopyrin tablets, which are Sufasalazine, one of the 5-ASA drugs. This represents a significant victory for my bloodymindedness.

I do not need surgery YET. This is of course how I have to think. I'm not being negative, but after the recent weeks experiences (hospitalised by azathioprine, instant rejection of 6MP) and past experiences with mesalazine, I cannot take any new drugs for granted. What happens if this one doesn't work I do not know. And shudder to think. So, tomorrow sees the return to admiting I'm trying to manage this blinkin disease. Or maybe wednesday...

The doc's instructions are quite specific. Obviously I can only get a 2 week prescription from the hospital - I assume this is now the same everywhere, something to with budget controls being in the hands of GP's(?) - but rather cunningly this should last me a little longer. The dose he has prescribed is for 2g's a day, but he wants me to build into this slowly. Therefore, I am to take 1 tab a day (500mgs) for a few days, then 1g a day for a few days and so on... depending how far I can get before either my colitis symptoms get worse (as with the mesalazine about 5 years ago) or my liver decides it can't deal with these either.

As usual I have read the leaflet extensively and the side-effect highlights are as follows:

Hair loss or thinning (of hair pressumably) - great. I've had sporadic problems with this already.
Suppresses white blood cells (1 in 700 people) - oh bloody hell, its immunosuppresants all over again.
Serious skin condition on the nose, blistering or peeling - that'll go down well in school.
Nervous reactions
Tinnitus, tingling in the hands and feet
Loss of control and hallucinations.
Stomach pain!
Swollen face!!
Heart muscle inflammation!!!
And my favorite: my urine may turn yellow(err, it already is...) or orange, which is harmless but will stain fabric, which "if soiled", and i'm quoting here, "should be put into soak". Apparently difficult stains can be removed with washing soda(?) or vinegar(!). So, I guess I'm going to have to put a stop to all that weeing on the sofa I've been doing...

God Only Knows.

2009-04-04T18:55:00.004+01:00

Croesus was a bloke in greek mythology (or maybe history - I'm not sure). He was rich. But he was also a man who was reprieved. Having failed to conquer the mighty Persian empire, the Persian King, Cyrus (Croesus nemesis), sentenced him to death. On the execution pyre Croesus bade his gods justify what was happening to him by intoning the name of his god 'Solon' three times... Cyrus was impressed and cancelled the execution (it wasn't quite that straightforward, because the fire had already started and it took more godly intervention to stop that, but that's not important (obviously it was to Croesus, but not to me right now)) and Croesus was saved.

What am I on about? Well, this end of the week I have been mostly feeling like Croesus. Minus the immense wealth unfortunately. But not minus the reprieve, thank my gods. Incidently there is something strangely coincidental about Croesus' defining diety being called Solon... reminds me of something...

On Thursday I was summoned to the RSCH because a second immunosuppresant had failed to work (6MP). My liver cannot metabolise those buggers. And so with heavy heart, I left school early initially to see the Nurse Practitioner. To discuss impending surgery. So, low was my mood I acquiesced to my wife's desire to come with me. For some reason I have always prefered going alone - I think it helps make it all less real, someone else being there forces reality to butt in. She works on a neo-natal ward two floors above L9, so it wasn't far for her. Anyway after the usual wait (I had a chat with an old chap who was new to the game (about 70odd and new to all this - lucky sod). He was in for the follow up to a colonoscopy and endoscopy - he'd had them AT THE SAME TIME! Sadly I have to admit to deeply childish images as our conversation ensued. He'd also had a previous colonoscopy without sedation, which if you ask me is MENTAL. The last one I had I have fuzzy memories of, which, in my opinion, suggests they didn't sedate me well enough) I entered the room like a condemned man.

So, she spent some time going over the current situation - mesalazine, azathioprine, 6MP all ruled out because of my disloyal body. Recent colonoscopy report showing significantly severe inflammation in the right colon, colonoscopy conducted by my consultant (and nemesis) Dr Cairns. His report recommended surgery. Yeah, there were a couple of other drugs that could be tried, methotrexate, infliximab, but the doc reckoned my colon was so f**ked really surgery was the only answer. Then she started on about the risks of Toxic Megacolon again...

At this point the Roid-rage had me simmering...

"But I'm well at the moment!" - ok, I'm on 20mgs of pred, but no symptoms.

"Why can't I just stay on a really low dose of steroids? I've done it before, everythings cool on 5mgs a day..." Nope - toxic megacolon again.

"But, I've read about people who are on azathioprine to reduce their steriod intake, but never manage to get it below 20mgs... so if I only need 5mgs, thats gotta be ok? eh?" Nope - bad management and toxic megacolon.

"But this is ridiculous!" I started to lose my rag.

"Erm, I think we need to get the doctor to speak to you" she said. I'll go and get Dr Cairns. Now, at this point I all but completely gave up hope. He did the colonoscopy, wrote the report, recommended surgery. We don't get on either, last time I saw him (long ago, not including the colonoscopy) I shouted at him. His attitude is extremely arrogant, like, oh, I dunno, some sort of Persian Emperor... I could only envisage banging my head against a wall.

Another wait. Then we go in. Repeat history. He checks all recent bloods, colonoscopy report etc. Describe all recent poo history. And then the clouds part. And a god (Solon?) pokes old Dr Cairns on the head. "Hmmmm" he says. "After your colonoscopy, having seen severe inflammation, and knowing you'd just come off azathioprine, I could only predict that you were beginning a huge flare and that we would be seeing you very quickly for surgery. However, having seen you, spoken to you, and looked at your tests, I think I was wrong. You DO NOT NEED SURGERY at the moment." Yep, that's what he said. I DO NOT NEED SURGERY at the moment. Obviously the middle bit of that sentence is nicer to type than the end.

I went home with new prescriptions (will outline next post) and a life-affirming dose of euphoria.

You gotta fight for your right to party.

2009-04-01T16:34:00.003+01:00

So, how do you approach the impending conversation about surgery? It's my colon, and I'll decide when it gets removed? Fundamentally I cannot see past that sentiment. I am not daft: I realise that surgery exists somewhere in my future, probably much sooner than I'd ever intended. But, is it not a fact that it should be done to improve my life? I have read into the procedure and people's experiences a little bit, and one fact that repeatedly jumps from the screen is the people whose lives had become blighted by UC welcome it - it is quite literally a new lease of life. I don't want to seem supercilious, but that's NOT me. OK, since last year I have had some ongoing troubles with the UC. And I have been pretty much stuck on the preds. But, and it's a big but, on a 5/10mg alternate day dose everything was very much under control. Yes, I need to come off it. But, hey, maybe over the next few monts I would have (previous to last March I had been off medication for 3 years). I have been able to go to work, play football most sundays, go out, go on holiday, even get down to Fratton Park a couple of times (I would never do that if I was worried about accidents - spending everyday with teenagers is dangerous enough, but 20,000 football fans... erk!). In short, life has most definately gone on. It has only been since the Gastro team insisted that I take azathioprine that things have gone downhill.

If I seem bitter, I think it's because I am. And the crux of it is this: who is in control of what happens to me? Me? The hospital? The disease? I don't want to be bloody-minded and make risky decisions based on fear. But neither do I want to feel that I have to fight the hospital team on every decision - I want to tell them what I want, and I want them to be supportive and measured in their response. A colostomy has to be done for the right reasons. And the right reasons, in my mind, would be my quality of life becoming significantly poorer.

Anyway, they phoned me back finally last night. My lovely little world of pretending nothing was wrong collapsed around my ears. Appointment made for tomorrow at 3pm. So, I gird my loins, and preare to argue my case.

Predictably, I had a little colitisy episode this morning...

The Drugs Don't Work...

2009-03-30T20:00:00.004+01:00

They make you worse.
But I know I'll see your face again...

I bloody hate the Verve - overblown, self-aggrandising rubbish - but old Mr Ashcroft was blooming right here, assuming he was refering to either the face of my consultant or facing up to UC. I had stopped posting here, partly because I'm bone-idle but, mostly because last october things were bumbling along nicely - low steroids, no symptoms. Everybodies happy, right?

Wrong. People up on Level 9 of my favorite hospital were unhappy about my steroid intake (5mg/10mg alternate days) and decided it was time I used an immuno-suppressant to get off them. After much gut-wrangling I finally gave in (I have to say they used scare tactics, telling me stories of a guy who got toxic-megacolon (heavy metal band anyone?)), although I should've listened to my heart. To cut a long story short:

started azathioprine (with noted low levels of TPMT) at low dose 50mgs daily.
2 weeks later felt rough - fluey - looked up side-effects, they suggested i could ride out these feelings.
started feeling nauseous.
hung on til a pre-arranged consultant appt (with rheumatologist - associated arthritis).
whilst in waiting room overcome with enormous need to puke.
puked in ladies loo.
moved to an examination room where extended stint of non-stop puking was heightened by puke turning into blood.
rushed into A&E when repeatedly vomiting blood and arms and legs started to paralyse (3rd March).
rehydrated, and kept in for 4 days cos liver had gone really bonkers and bottom all over the place.
discharged after several tests, anti-biotics, IV steroids, with no real idea what had happened, but everyones best guess being it was the drugs wot done it.
had a colonoscopy a week later (14th March) - nurse reported (doc couldn't be bothered to wait for me to come round, it was a saturday after all - golf course was waiting, eh?) inflammation had been found in rightside colon... but I couldn't get the idea she was holding something back out of my head.
saw clinic nurse practitioner three days later, to discover the missing info: the doc was recommending SURGERY... arrrgggghhhh.
persuaded her to persuade him to try 6MP.
started Mercaptopurine last weds. Took one dose, by that evening was glued to the loo and feeling awful.
haven't taken any more... Phoned UC/Crohn's helpline at hospital for advice, further appt etc. Called twice and left messages.
no return calls.

So, here I am now. It's all up in the air. The hospital aren't returning my calls so I'm enjoying a couple of days ignoring the future. But sooner or later they're gonna get me in and I'm gonna have to start arguing about the need for a colostomy. I don't want one. Not yet.

Mambo Italiano

2008-10-16T19:36:00.003+01:00

Further to the last post:

1st half performance in Minsk: England are malfunctioning in midfield again, the ball is passed around with some aplomb at the back and then hoofed forward at Heskey, circumnavigating midfield, in the hope that he can hold it up for Rooney to produce the preferred outcome. Meantime Walcot tears up and down the right channel with pace, but is messy in his final delivery. A brief lead is undone by more fragility in the middle as Belarus slip the ball neatly through.

Wednesday morning: following, by now, a near 48 hour gap between toilet visits, all early hubris is undone at 9am. During a, thankfully, free period I have to undertake that hilariously familar run to the toilet - hilarious because I can only imagine what it must look like to the casual observer as I run and desperately clench my buttcheeks at the same time. What better place to indulge in this weird stiff legged run than in a school, where nobody is on the lookout for reasons to undermine you... Upon reaching said toilet something approaching a heinous McDonalds thick shake is delivered in the nick of time.

2nd half in Minsk: a little Italian jiggery-pokery at half-time sees Gerrard push forward in midfield and suddenly Belarus are on the back foot. England still regularly lose possesion, but there's menace in their attacks - even Heskey is taking on and running at defenders. Rooneys game suddenly comes alive, slick passing ensues, then goals. The last 15 minutes are a cakewalk.

Thursday morning: the toilet beckons at about 10.45. But there is no urgency or cramps. Rather that, I hesitate to say this but, 'pleasant' full colon feeling that tends to preceed a proper log. What arrives is probably best described as initially log-like and then stodgy. A hugely improved outcome.

Like I said, inconsistency. Weird.

Maybe, as I sleep, Fabio comes and talks to my bottom.

A New England

2008-10-14T19:51:00.003+01:00

I know how Fabio Capello feels.

A few weeks ago he was watching his England team perform at first caustiously, then with growing confidence and finally exactly how he wanted them - with a more than satisfying outcome (Croatia 1 - England 4). He must have been extremely pleased (if not completely, 100% convinced it was going to last). And so was everybody else. So, imagine his dispair when they delivered an utterly demoralising performance when faced at home with the mighty Kazakhstan: unsteady at the back; malfunctioning in midfield; and with a forward line that did not inspire confidence and did not produce anything solid... OK, they won 5 - 1, but the point is they are unable to produce any kind of consistency even from one game to the next. How can he ever rely on them? How can he ever relax to the degree that he can stop thinking about the likelyhood that their next performance may be another that pains and potentially embarasses him?

Now consider my stupid bowels. A few weeks ago they were working in perfect harmony: no dodgy pains or twinges/flutters creating nervous apprehension; good, slow digestion in the middle, and a pleasing solid outcome at the end... All was good. I even started to experiment (non-alcoholic beer, curries, olives: the gastro equivelent of the christmas tree formation) - all was functioning satisfactorily. Then... all of a sudden, no explanation forthcoming, things go wrong in mid-colon and everything gets sloppy (ok, forgive that turn of phrase, I'm trying to maintain an analogy here). So now I'm under the pressure of an underperforming colon and despite all my best efforts (tactical use of preds, substitute bland food, not eating etc etc) I cannot engineer a change. Until...

Today, I had to go a school fieldtrip. I won't bore you with the details, but it essentially meant a day miles away from a loo. So, I went to school early, hoping the current urgent morning poo would arrive whilst still on school grounds. Nothing. I reluctantly boarded the bus, fearing the worst. Nothing. I eagerly alighted at the one short stop of the day (I was even prepared to use the public loo!). Nothing. I am sat here at home at 8.30 in the evening. Nothing. That means I have been something like 36 hours - no pain, no urgency, no... nothing.

So, just like Fabio, I sit here contemplating the inconsistency. Why is it there? What can we do? Why can't Gerrard/my bowels and Lampard/my immune system work in better harmony and produce a nice solid end-product? And where does Theo Walcott fit into a weak international-football-as-ulcerative-colitis metaphor?

Walk on the wild side

2008-10-08T20:46:00.003+01:00

"Whisper it: I've only gone and done a number 4"

Such was the start of a post I almost put up yesterday. Then I thought better of it. Too late - merely thinking it was enough. I am still wavering around the upper 5/6 area of the Bristol Chart. I haven't decided whether to change my pred dose or not yet - its a case of ensuring I've got enough to last until the next hospital appt on the 4th November. I have been having sustained thoughts of embarking on the azathioprine... but it really depends on the mood I'm in when that hospital appointment comes around.

And so to other matters. Until the recent mini-flare-up, I had begun to appreciate the restorative powers of (the once anathema) non-alcoholic beer. Yep. Thats what I said: NON-alcoholic beer. Far be it from me or my blog to become a vessel for capitalist advertising, but this is the stuff I'd been drinking:

In the formative years of my drinking life the main contributors to the world of alcohol free beer were Kalibur and Barbican... hoho, remember those: "Bar-be-can... alcohol free beer...??!" Cue californian prohibition era policemen with the feeling of redundancy dawning on their faces as in the background others smash up a speakeasy... ah, I used to love that advert. However, when it came to drinking the stuff i) never in a million drunken years would you be seen dead with one of those clutched in your lifeless hand, and ii) everybody I ever knew, including me, claimed they tasted disgusting "euuugh nuffink like 'real' beer". Even the efforts of Sean (I am an adult, honest) Bean couldn't get us to drink em.

However, needs must when the Devil lives in your bottom. And so, with weary reluctance I dutifully tried a gulp when offered by a pregnant aquaintance recently. And, blow me, if it wasn't pretty bloody good. Now I have to temper this sudden embracing of contemporary alcohol free beer with the footnote that I haven't touched a drop (your honour) for 42 months... which may mean my beer tasting buds have gone wonky, but really the stuff tasted wonderful. Just like the real thing! Lordy, a glimmer of hope! Upon closer inspection it seems that the brewers achieve that authentic beery taste by brewing it first AND THEN removing the alcohol. Marvellous.

Two points to note, however:

1) After 3 bottles, I had to try to ignore the hollow feeling that was starting to grow... Maybe one or two is enough.

2) I woke up with a bloody hangover! Can anyboy explain...?

Bone machine

2008-09-30T22:34:00.002+01:00

Aha. Messrs Brown and Cameron must have read yesterday post...

Visited the GP this morn to get more drugs. I should have reduced my pred dose to 5mgs a day by now (and therefore have some left) but all is not well in the world of the bowel. Not awful (I have yet to completely refuse to fart), but not good, not right, and most importantly not solid. So, I waited for an appt with my usual GP to avoid the complex issue of persuading a less familiar doc that I am capable of deciding for myself when I need more steroids, rather than speaking to a consultant first. Fortunately the doc agreed and gave me a prescription for enough preds to last until the beginning of Nov, when I have another appt with the rheumotologist, at the current 5/10mg dose. Although after the most recent visit to the bathroom I may just have to up that to 10 mg a day. Mmmm, I'll give it a few more days.

What was new, though, was an extra concoction of drugs. My GP was concerned that I had been on the preds for a while (about 4 months, though pretty low doses), citing worry about weakening my bones, particularly as he seemed pretty intent that I was a 'fit young chap'. Does 35 still count as 'young'? So to counter this he has also prescribed me Fosamax and Adcal-D3. The adcal stuff is just a vit D supplement, so no great fears there, but the Fosamax is some sort of bone strengthening stuff (some sorta acid, I forget exactly what now), and so I read the possible side effects and 'when not to take this medicine' stuff as usual. This included instruction not to take if you have/are suffering from stomach problems including ulcers. Ulcers. Ulcers. Ul-cer-a-tive colitis... Bum. Both the doc and the chemist assured me that this was strictly related to the upper digestive system - the doc looked it up on the computer and the chemist looked it up in her little black book. But the seed is sowed...

Anyway, they didn't have in the chemist, so I 've ordered it. Excellent news, as this means I can delay any decision for at least, ooooo, a day.

Interestingly, it also instructs you to take it 30 mins before breakfast and stand upright for that period of time. But only once a week.

Don't believe the hype

2008-09-29T21:51:00.002+01:00

At the Tory party conference today the Tory health spokesman Mr Andrew Landsley announced plans to create the option for anybody going in to hospital for planned care to have a single room.

Haha.

I would also like:

to see the same consultant every time I go to gastroenterology
to wait less than 4 months for my 'rushed through' appointment to discuss azathioprine (still waiting...)
to have access to drugs and therapies that are not yet even being considered by NICE
not to be told by a consultant that he can't help me unless I do exactly as he says even when I have serious reservations
to be able to get a prescrition from the hospital rather than having to make appointments with my GP that are a minimum of 2 weeks away
to not have to experience the farce that is sitting in front of my consultant while he dictates a letter to my work, which he then emails to SOUTH AFRICA to be typed up and posted back to the UK...
to get a blood test without having to wait for over an hour clutching a Tesco-deli ticket
to have an appointment for an x-ray/scan that does not involve a wait of hours
better pay and conditions for my wife - a nurse (yes, we are the classic key worker family)
and so on and so on and so on ad infinitum.

And while he's at it he can bloody well go and find a cure for UC. I am not a Conservative voter. But I am not happy with my experience of the NHS as a sufferer of chronic illness.

The NHS, in my opinion, is much like the current economic situation - a hugely important issue used as a political football. Instead of cheap, and indeed faintly ludicrous, point-scoring opportunities isn't it about time political parties worked together to reach a solution instead of vacuous polemic and rhetoric?

It's not staying on a ward with other people that bothers me, it's the inexorable demise of our health system.

You've been gone too long

2008-09-26T22:03:00.002+01:00

Nope. I have not been sucked into a black hole. As far as I can see the world has not changed since they turned it on. So, where the heck have I been? Um, good question. I think the only answer is: I went back to work. And to balance out the effort of working I have become intellectually lazy in all other elements of life. But, now I'm rousing myself and getting back on it. A brief resume of the first 4 weeks back at school:

The first two weeks back: no toilets. Not ideal for a man in my condition. Actually I exaggerate here, because it was the student toilets, not staff, and it wasn't all, but about 75%. However this still begs two questions: i) surely, if you are going to refurbish the toilets in a school of 1700 students over the summer holiday, you do it before they end? ii) is there not some law about the minimum number of toilets available - some sort of child-to-toilet ratio - that forces the institution to remain closed? I tried that second one in order to secure another week or 2 off, but to no avail (I know, I know...). I shoulda got out my NACC card.
Incidently, I have worked at this school for 7 years and this is the second time the students have had a complete toilet overhaul. The first time they even got to vote on the colour (citizenzhip at work...). This second hold-up was due to the 'vanity units' beng unsuitable. Now call me a cynical old bugger if you like, but never have they refurbished the staff loo. And there are only 3 male cubicles in the whole school - a lenghty building, at least 300m from end to end. And the one nearest me is, frankly, disgusting. Someone should be ashamed.
Crappy timetable. No free periods on a monday or a friday - surely the days when one needs to be cut a little slack?
Good results for my last GCSE group. I cannot take much credit - they were a great group of kids. Sadly this already means somebody is setting targets for next year based on exceeding this year - because year-on-year the government/management/public can only perceive that results must get better (as measured by grade totals). Cos there's nothing invariable about 330 new children each year, is there?
New GCSE group contains the most arrogant girl in the world. Cheeky kids I can take. Lairy kids I can take. Mouthy, sweary, downright bad kids I can take. But, arrogant kids I just want to slap.
A strange cyclical UC situation. I have noticed this happening before. But not while I was on the meds. I am still taking 5/10 mgs of preds alternately, which has continued to keep evertything relatively stable. But I am definately going through a sort of poo-consistancy cycle. It goes something like this: On holiday things got loose (I put it down to the tomatoes) then it all got a bit stuck (change in water thinks I), then we got home and things loosened up again (change back to the normal water, plus pre-school mild apprehension?), then it firms up again, so much so I even started to carelessly risk olives (!) spicey food (!) blue cheese (crazy fool!) and so on, but it only got more stuck (even... brown bread!!), and now its got loose again (doh!). I have not had to go to the loo more than twice a day, during loose periods, too often, so its not been horrendous, but it has lead to more of the old mental scouring of everything I have/have not eaten/drunk. And several occasions of crouching and staring intently into the bowl trying to identify morsels...
So, I 've made an appointment at the GP's for next tuesday to get more preds, cos I don't want to stop taking them just yet and I'm running out. And I've just found a bloods envelope (that I hid from myself) that reminds me I'm supposed to get a test while I'm on the 5/10 split.
I'm back on those blinkin' yogurts...
Everything has been put into perspective by the birth of my best friends baby boy. Fab.

Bang, Bang You're Dead.

2008-09-09T21:27:00.005+01:00

Currently in our household the Large Hadron Collider is causing much consternation. I have to admit I, myself, have been rather capitivated by this mind-boggling machine. Its job (as I, an utter physics dullard - I have qualifications here: A-level physics, failed twice - understand it) is to collide protons under controlled conditions at speeds just below the speed of light in order to create explosions of energy/matter that closely resemble the circumstances of the fledgling universe right after the 'big bang' (for a better explanation try the BBC). The purpose of this is to seek out the existence of a mystery particle, called the Higgs Boson I think, which will itself help tie togther the principles of Einsteins theory of general relativity and the standard model of quantum physics. Thus bringing harmony to the world of science and proof that the 'big bang' theory is right. I practiced this mini explanation of the (clearly far more complex) experiment on my wife before going to school this week, in preperation for the inevitable questions from the kids. I definately held her attention for at least 50% of it before she glazed over - as she does with all my favorite topics of discussion: geography, football, cricket, the poor state of party politics in this country... etc. I therefore considered this to be a triumph of scientific summary. So what of the consternation...?

Well, my eldest son has also developed an interest in the LHC. However, his attention was caught not by the science but the kind of media driven, gossipy hyperbole that school-kids love so much: "Dad, tomorrow they're gonna switch on a machine that will make a black-hole that will destroy the whole solar system..."! Firstly, I'd love to see his image of the 'they' who he thinks are going to switch on this machine... davros? blofelt? darth vader? Next, I wonder when he will develop that logical thought progression which will enable him to see the futility of anyone willingly creating a blackhole to destroy the whole solar system..."Yes, at the flick of this switch the planet and all her inhabitants will be in my control; that power would set me up above the gods..." SWITCH, BLACKHOLE, DISAPPEAR... "Doh". So having put him straight (Professor Brian Cox assures me that the chances of black hole creation are slim to zero, and anyway they would be contained by the magnetic field. And I believe him, so there), with my specially designed 'brief explanation of the machine' (TM), I sat back with a feeling of Dad-work done well. We then followed that understanding with some light-hearted riffing on the consequences of a black hole. All the while my younger son is listening in and, unbeknownst to me, latching on only to words such as SWITCH ON MACHINE... BLACKHOLE... SUCK IN THE WHOLE PLANET... DOOM... DEATH... MORE DOOM... TOMORROW TOMORROW TOMORROW... Cue one fraught son and at least 2 hours of constant reassurance. If Prof Cox is wrong, I'm gonna look a bloody idiot tomorrow.

All of which left me with one thought. If they can build a machine that replicates the origins of the universe in miniature, under controlled conditions, why the buggery can't one of these damn scientists come up with either i) a proper explanation why my bowels don't work properly, or ii) a better way of controlling IBD than intermitantly effective drugs and eventual surgery?

Bastards.

Hooray Hooray, its a holi-holiday

2008-09-01T17:41:00.006+01:00

I've finally dragged myself out of my post holiday blues/torpor (with a twist of pre-school bumming-out) into some blogging activity. The holiday was great and did me the power of good - a fabulous mix of relaxation and adventure, with barely a thought of UC.

A brief summary then. Drove to Dover and got ferry to Calais. From there popped up into Belgium to visit some WW1 cemetaries around Ypres (an odd but poignant start to the holiday). This brief stop-over was somewhat lengthened by: a) the Belgians slightly haphazard approach to road signage; and b) the utter failure of my fellow drivers satnav to work in Belgium (I myself as a self-respecting geography teacher bloody-mindedly refuse to have a satnav in my car - its maps or nothing!) (apropos of that: I am also the worlds worst travelled geography teacher, hence this being something of an adventure)(but I do have good knowledge and a keen sense of direction. Promise.). Eventually, with a large slice of luck, we stumbled onto the road we were after and we were OFF! Drove on through Luxembourg (most of which was obscured by the most insanely heavy rain I have ever experienced in my life - I had to glue my self to the back of a lorry in order to stay on the road), back into France (long, empty toll roads), through Strasbourg, across the Rhine and south along the edge of the Black Forest to a little place called Sulzburg. Here we camped, although arrived with moments to spare before they shut the campsite. Early rise and onward south into Switzerland. Switzerland is the most fantastically beautiful country... with some hilariously serious people. Although I could have happily stayed in the swiss alps forever, we stopped only for a few hours and a fondue (mmmmm) in a place called Andermat. From here we drove over the Alps on the windy St Gottard pass, stopping to stare goggle-eyed into a huge glacial valley leading down into Italy. Then on past Lakes Lugano and Como and into Italy. Here the land flattened out onto the N. Italian plain, which was just that: plain. Around Milan and down to Parma, where we camped again. Up and out early again next morning and south-east past Modena (home of balsamic vinegar...mmmm) and Bologna (home of... ok we all know that) and then south down to Florence - from Bologna south Italy is beautiful. In Florence we spent a few hours wandering, experiencing a flavour of this lovely renaissence city. Then off again into the mountains to Florence's east and another campsite. Next morning we visited a monastry where apparently St Francis experienced the stigmata. Which was nice. Then on for the final leg south, past Perugia, finally stopping in a little farmhouse (on an organic honey farm) situated high on the slopes of the Tiber valley, under a little town called Giove, about an hour north of Rome.

Due to the nature of the trip down we felt under no pressure to do loads of sightseeing - just lots of relaxing around the pool (see pic above). We did get the train down to Rome one day, which was amazing (and stunningly cheap - less than 10euros per adult) and wandered into Giove regularly, frequenting all the superb local food shops.

A week later we came home. A different way. And slightly quicker. First we hammered up to Florence and then across toward Pisa and the coast. Here we encountered only the second traffic jam of the whole trip. Then I took a slight wrong turn so our car detoured through the city of Genoa (looked nice), and then up, up, up through the Val d'Aosta until we reached Mt Blanc. Awesome. Through the tunnel (expensive and dull) and then into Chamonix Mt Blanc, where we camped again - right on the foot of Mt Blanc herself. Hilariously somewhere between Genoa and Chamonix the bottom fell off the car and I dragged it along, haha. So that precipitated a visit to a french garage, where the mechanic was superb. Camping under Mt Blanc was spell-binding. It would appear I have developed a deep love for staring at mountains... After a morning of taboggining down the summer run on the mountain we hit the road again and slowly wound our way through the foothills of the alps and past Geneva and eventually back onto the french toll roads. Thus we sped up into the Champagne region and camped in Epernay. From here a short hop accross to Calais, ferry and home to cloudy Brighton.

So, what of the UC? Apart from a little hiccup (overindulging on tomatoes methinks) pretty much nothing. Which, sadly, hasn't been the case since I got home...

Holiday Fortnight

2008-08-12T18:54:00.003+01:00

Well, I chickened out of lowering my prednisolone dose. I was supposed to move to 10/5mg on alternating days around about last monday (5th), but due to a combination of mentalness and (possibly psychosomatic) physical symptoms I didn't. I know, I'm an idiot. However, I did have my reasons. Firstly, whether they came about because I was stressing or not, there were some definate rumblings in the old bowel. No real pain, an increase in mucus (it is the existence of mucus, and the consistent describing of it, that I have always felt least comfortable with during this illness - describing the consistency of my poo? No problem. Describing how often I have to go? No problem. Describing amounts of blood? No problem. Describing the frequency of accidents and actually having to admit to having been practically incontinent at one point? No problem. Describing the amount, frequency and consistency of mucus in my poo? No, I'm sorry, but that just seems wrong, wrong, wrong. In fact, to be honest, I find it rather uncomfortable just admiting to myself its there. Go figure.), no blood to speak of, but some distincly runny-er poo and... you know that feeling... So it became another few days of crouching over the loo (post movement) and scrutinising its contents. This, I'm afraid, does not lead one into the required mindset for a change in dose. On the contrary, it rather makes one cling desperately to those little white pills all the more. Damn them.

As well as all this mental and physical anquish (actually I've been pretty good mentally. I told the wife straight away how I was feeling, made the decision not to change dose pretty quickly and have stayed pretty cool. Its just the old quiet nagging voice in the back of my head...) there is a second reason. We are about to go on holiday. To Italy. By car. Now driving to Italy (over 3 days I hasten to add) probably has its challenges at the best of times. But driving to Italy with the perpetual fear of where the next toilet might be is too much for me to cope with. Especially with 2 kids in the back. So, for the sake of as enjoyable a holiday as possible I opted to stay on the steroids for a little bit longer. I'll have to change the dose when I get back because I've only got enough tablets for about another month anyway and my GP is never all that keen to give me any more without speaking to the hospital (who, incidentally, I STILL have not heard from, despite them telling me in May that they were 'pushing through' an appt to dicuss azathioprine). I just hope that the driving antics of our european neighbours and my 'roid-rage' do not prove to be too volatile a mix.

I intend to try and post whilst away if I find anywhere (internet cafe etc).

Shake, Rattle and Roll

2008-08-04T23:12:00.003+01:00

A long time ago in a place far, far away a man said to me:

"If you vote Conservative in your twenties you've got no conscience. If you vote Labour in your thirties you've got no money."

I didn't believe him then, and, perhaps more importantly (now I'm deep into my 30's) I don't believe him still. Or maybe I just haven't got enough money... But, although the principle is wrong the sentiment has some truth in it. The older we get, the more we change. I have seen more than enough of my parents in my own parental behaviour to drive me to despair. Every day I am faced with the heinous recognition that my eldest sons latest cry of "its not fair" is a retort to one of my own fathers favorite idioms that has just tripped off my tongue. And each time I'm reminded of Larkin's poem, 'This be the verse'. I can remember making vehement pacts with myself that I would never be such a mean old bastard, I would let my kids do what they wanted... But now, well, I'm bloody right and the boy's wrong: life is unfair. So there.

I've changed in other ways too, and recently these changes have been UC instigated. I was reflecting on an aspect of this yesterday as I trawled round Tesco doing our (approximately) fortnightly shop. It was in the loo roll aisle that I was reminded of that quote above. How my attitude to bum wiping has changed...

When I was a kid I barely gave toilet paper a second thought. It may have momentarily entered my consciousness that each roll was colour-coordinated depending on whether it was in the bathroom or downstairs loo (my memory says green for downstairs and peach for the bathroom, but that could be the other way round. Actually my mother still does it, and I still don't take it in properly - are there people who would sit in there and think to themselves "Tut, the toilet paper doesn't even match the walls. Lazy cow."?), but otherwise the only place it really mattered was at school. This was because in the unlikely event that I went for a poo at school (surely this was one of the things most feared at school - or was it just me?) the clean up operation would have to be conducted on what could only be described as tracing paper. How anybody in their right minds could conceive that that stuff was going to be even slightly useful in removing the offending objects from ones tender behind is utterly unfathomable. All it managed to do was broaden the issue, whilst simultaneously being quite painful.

Once I'd left home to be a student toilet roll was never high on my shopping priorities. In fact we were more than happy to buy the cheapest available. In my house we persevered with this throughout our tenure despite the inevitable drawbacks. As I see it value or economy loo paper usually demonstrates one of two unwelcome attributes: EITHER it is made of some substance that is somewhere between sandpaper and card (sort of like compressed woodchips) which (whilst having superlative wiping power in comparison to the school stuff) is guarenteed to lacerate your poor bottom - especially after a night out/curry; OR it has all the strength of real tissue paper, leading to unwanted, but frankly dishearteningly predictable, finger-bottom contact. Despite sitting on the loo on innumerable occasions with either tears streaming from my eyes, or the dejected slump of someone who has just accidently used his fingers, we never ever ever, upgraded...

And, in fact, I persevered with the same old cheapo loo roll well into my relationship with my now-wife. The onset of kids didn't even change me - we were poor, see. But it did introduce the concept of 'wipes' into the bathroom, which have added a soothing aspect to proceedings.

However, the dual factors of increasing household income and UC have changed my outlook completely. Not only have I finally eschewed economy stuff, but i have moved slowly through the loo roll ranks to finally embrace not just ultra soft, but QUILTED! Oh God, that stuff is sooooo good. It's strong, absorbent, soft and caresses my poor sick bottom with a gossamer touch. I don't care how much it costs. I don't even care whether it's recycled or not. Stuff the money, stuff the environment, this is my bum we're talking about. If you use economy loo roll in your 20's you haven't got any money, if you're still using it in your 30's you haven't got an IBD...

What's Goin On?

2008-08-03T11:34:00.002+01:00

The return of the Bristol Stool Chart. It has been 4 weeks since I had my last appointment at the hospital (in rheumatology). An ideal time to consider the current sate of affairs.

1. Prednisolone. I am taking 10mgs every day for the final time today From tomorrow, as discussed with the consultant, I am changing to an alternating 10 - 5 mg dose. This is good because I am sick to death of the shakes and the spots. This is not good because, as usual, up to this point everything has been hunky dory... but now...

2. Poop. 4 weeks ago things were somewhere around Type 1 or 2 (like nuts!). Then I started the probiotics, wherein they went to, ooooh lets call it a 4.5 (for artistic merit). This I took to be my bodies usual mentally stimulated resonse to change (I think my physiology is the perfect representation of a blue-rinse tory: doesn't like change and doesn't like foreigners). Things stabilised and I've had a good two and half weeks of 3/4's. Lovely. But, this also lulled me into a false sense of security - oh, how easily I'm swayed by olives, pickled onions, Thai curries etc. This final week has consequently been a mixture of 4 and 5's again. But then, that might be normal, I've forgotten what that is...

3. Yoghurt. Firstly I can't make up my mind how I want to spell this - with or without an 'H'? I started on the Activia and then moved on to the Muller Vitality as I was informed of their PRO and PREbiotic attributes. There is not much I can say about these. During the period of 3/4's I was taking them regularly, and after the initial bloatedness all seemed well. Then last week, as described above, things not so good. But crucially, I got a bit lazy, and when I ran out of yogs I couldn't be bothered to go and buy more, so I stopped having them every day... Well, I don't know if that would make much difference... Also the vanilla ones are infinately better than the strawberry ones.

4. When I've changed the steroid dose, I have to go and have another blood test. Joy.

Don't worry baby

2008-07-24T09:28:00.004+01:00

I fought the urge to use the obvious title to this post... School is, indeed, out though. And what a long, dragging summer term that turned out to be. It felt like it would never end, and I worked right up to the final day (no cop-out videos in my classroom). But, I know better than to moan about my job as I settle into a 6 week holiday. Needless to say as term petered out laziness ensued and a week has appeared between posts.

The school holidays are always an ironic time for the health conscious. I have had enough experience myself, and as many conversations with colleagues, to concur with the idea that no sooner than the holidays start and you're ill. For most people this involves succumbing to the inevitable cold, and is grounded in the theory that during term time we are somehow running on adrenalin, which in turn fights a 24/7 battle against the army of germs that brew up in the hot overpopulated environment of the classroom. On any given winters day, when I have 32 little monsters sat in my room and the school heating is on full blast (there are 2 settings: ON or OFF) the atmosphere is positively tropical. I'm surprised (with my record for illness) I haven't had malaria yet.

On the penultimate day of school I bumped into the Head in the corridor. We did the obligatory "how are you?" conversation (I am still not at ease with her viewpoint on my UC) and then she said "well now term's over, you'll be able to get a break from the stress". And so she raised an interesting point.

Stress, without doubt, has a massive role in the life of the UC sufferer. My first hospitalisation with a flare-up was preceeded by trying to get 60 wonderfully motivated students (!) to complete their coursework on time and to the best of their ability. I can't say for sure that this was the crucial factor, but it definately didn't help matters. In fact in the early years of my teaching life I worked in a very difficult school for 3 years (failed ofsted, special measures, kids from a socio-economically deprived area), and every day was commenced with a 3 floor sprint from my classroom to the staff toilet - at the time I had never heard of UC, but in retrospect I think this may have been a sign of things to come (in sooo many ways...). Since those dark days, and as I have become much more informed and wise about my own condition I have actively sought to reduce stress in my life. Teaching is stressful. So I am a classroom teacher (in a much easier school). No more, no less. The remuneration for taking further resposibilities is not adequately reflective of the extra stress that would be taken on. I see my boss every day, and he constantly walks the precipice between sanity and breakdown. My job is stressful - but so is everybody else's. And to return to the Heads point - is it actually possible to avoid stress even when you are not at work? Some examples:

I have been helping some good friends sort out their house before moving to another part of the country. Every inch of this process has caused them stress: sorting through years of accumulated things (what to keep? What to let go?); renting out your home; finding a new suitable home; decorating; actually physically moving...
One of my best friends has been trying to fan the embers of his relationship, which has become long distance, meaning weekends of travelling or constant phonecalls...
My other best friend is in Jordan with work while his pregnant girlfriend is at home in the UK...
My neighbours have just had a premature baby...
6 week summer holiday, 2 kids to entertain!
Years ago, before I was a teacher, we never had enough money for anything - but were determined not to go into debt, so each and every day was about scraping by. And now there are thousands of people in that situation...

These are just things off the top of my head. There are too numerous a number of things that make life stressful. And each person has a different factor that causes them more stress. I have ALWAYS had the physiology that means that stress manifests itself straight in my digestive system. Oh yes, I can remember many a pre-job interview rush for the toilet...

So, what's the answer? Well, I can only say that, for me, talking is the key. As hard as it has been sometimes to admit I'm suffering from stress, getting yourself to tell somebody else is vital to dealing with it yourself. Most stressful situations can't be avoided, I find you have to take them on with honesty to yourself and others.

Here's a final thought: If I feel that the UC is starting to flare-up I start to worry about it... anxiety goes straight to my guts... stress is a recognised trigger for UC... so I worry that the UC is flaring and I worry because I'm worried about it... Now, that is stress that's hard to manage.

Suicide is painless

2008-07-16T21:23:00.004+01:00

When the UC reared its ugly again earlier this year it was the worst it had been for about 3ish years. As this flare-up came on the back of a week in hospital (see here) I decided that I had seen enough of that place for a while - acually the exact moment at which I decided I had seen enough of my delightful local hospital dovetailed neatly with the moment I decided that there was indeed a strong chance I was not going to make it to the next day: feebly laying awake, barely able to move, in the middle of the night, while an extremely surly Balkan 'nurse' made up for the lack of a drip stand by tying my anti-biotic IV drip to the lamp above my bed. I started having hallucinations about being in a combat field hospital... altogether now:

Through early morning fog I see
visions of the things to be
the pains that are withheld for me
I realize and I can see...
[REFRAIN]:
that suicide is painless
It brings on many changes
and I can take or leave it if I plea

Where was Radar when I needed him?

Thus when the cramps and poo and blood started again, I decided that I needed to get more proactive and face up to the truth. Initially this lead to my joining the NACC. Now, I had been blithely saying "Oh yeah, definately" to my GP and IBD Nurse every time I saw either of them and they recommended I take this course of action (which they did EVERY time I saw them). So this time I came good on my word and joined. And made a little donation too, which was nice. Joining the NACC was a good move for me - I've read a great deal of interesting research papers for one thing, and been able to get fully knowledged up on the azathioprine in readiness for crossing that bridge. However, it would seem that those fellows at the NACC passed on my name to my local IBD 'group'. I have absolutely no wish to speak negatively about this or any other group. I am utterly convinced they provide wonderful support for all their members and they have my utmost respect. But I wasn't, and remain, unready to join such a group. The idea of meeting up in cafes in town on a regular basis and sharing experiences is not a place I'm at yet. I can't quite even bring myself to open the newsletter they send me every month.

Despite all that (and I know these are issues of my own, rather than others) I did feel the need to exorcise myself of some of the UC demon. And so I came to blogging, and blogging is fantastic. I have discovered many other UC blogs out there (yes, I need to update my blogroll), each and every one brings new perspectives and, possibly more importantly, recognisable situations: EMPATHY. Not only those, but I have taken great heart from those people who have kindly left comments here at the Mercy Seat. Which brings me to my point (finally!)...

Whilst sifting through the assorted information we keep on the kids at school (special needs, medical info etc) earlier this year, I discovered that a boy I teach has UC. He is a frail looking, pasty and rather quiet chap in year 9. He has that pensive look about him that I often feel is fixed on my face. He has a troubled brow and his shoulders seem to bear a weight. I would guess that his UC is active, there have certainly been periods of absence this year. And yet I have not said anything to him. I cannot decide whether it would be the right thing to do. On the one hand I think I might be able to give him something that the blog has given me. On the other hand, I might come across as an interfering bastard. So, what should I do...?

While you decide, I'm going to have a late-evening medicinal cigarette in the garden.

The Wind cries Mary

2008-07-13T19:41:00.003+01:00

Fart, trump, toot, cut-the-mustard, float the air-biscuit, guff, trouser-cough, a real bronx cheer (come on, didn't you have a whoopee cushion?)... whatever you call 'em, those windy-pops have been my tormentor for the last 5 years.

I grewup in a household where a mans windy emissions were his pride and joy. It was expected for them to be delivered with a triumphant fist clenched and a cheek proudly raised. But UC ended this. I will never forget that instant of crest-fallen realistation when an apparent moment of exaltation in front of my awe-struck audience (the kids) ended in a wide-legged dash to the loo. And since then each new fart is greeted as a potential imposter. Yes, I've been caught out but I've also developed one helluva sphincter...

Its sure had a work out this week. After the initial (clearly metally induced) bowel wobble I've settled into this probiotic diet. Just one a day, as they say in the ads. The main thing I've noticed is an increase in bloaty-ness. Which is weird because I'm sure those ads say that the friendly bacteria get rid of that. Maybe thats only the ladies - why are women the main targets for bifidus digestivum et al? Or, maybe, God forbid they're... lying! Anyway, bloaty-ness always sets me on fart-edge, so I've been walking round with a fully clenched sphincer all week. On the whole though, I've beem feeling pretty good (prednisolone effects aside). So much so I lulled myself into a false sense of security and risked a Thai green curry last night. Whoops. Hello toilet, my old friend...

No milk today

2008-07-08T21:40:00.004+01:00

Today I embarked on my rheumatologist instigated course of Probiotic yoghurts. The first hurdle was to decide which to buy. Do I go for Bifidus Digestivum? Bifidus acti-regularis? L. Casei Imunitass? Lactilus colonactiviatius? OK, I made that last one up. But, you can't help reading these bloody things and thinking they're all made up. They read like the results of a competition at the marketing departments christmas piss-up. Indeed there is a link to an article on lovely old wikipedia deconstructing each of these cod-latin terms here. Not a good place to start though, so if you're thinking of trying them, don't read that.

In the end I plumped for Actimel. Ths is made by Danone (who get a right spanking in the article linked above!). This was the brand suggested by the professor when asked... but I got the distinct impression he named the first one he thought of. He wasn't amused by my query about whether they sponsored him anyway. The final decision making factor was that they contain L. Casei Imunitass, which in my opinion sounds the most likely of those terms.

So, what the hell is it? Well, thats summed up nicely in another wikipedia article here. Its all based on a 'friendly' bacteria called Lactobacillus casei. This exists naturally in the gut and mouth, and when taken as a supplement can lead to the increase in intestinal microflora which on the whole is consider helpful in balancing the responses of the immune system in the bowel. Very nice too.

But does it really work? Well, I've had a little explore on the 'net (thanks google) and most of the research papers I've found (that I could understand) suggest that... no-one really knows! But the finest minds of medical science seem happy to agree that it sort-of-seems-too. Here's some of what I discovered:

p414 of this journal '2nd Probiotics, Prebiotics and NewFoods' has a summary paper about the responses of mice with colitis (!!!) to probiotics. Essentially they decided that the probiotics definately had some effect on the intestinal inflammation of the mouseys, but they're not sure exactly what. I have to say there is a definate trend in trying this stuff out on mice. In this particular one they removed the whole intesinal tract of the mice and transported it in dry-ice to the place where they did the testing. But I still can't over the fact they found some mice with colitis.
Daisy Jonkers, PhD and Reinhold Stockbrügger, MD, have written paper helpfully entitled 'Probiotics and inflammatory bowel disease'. Daisy and Rheinhold do go on rather a great deal about mucus but in the end reach the conclusion that "Studies on probiotics in animal models of colitis are promising" and "If probiotics do prove to have beneficial effects in IBD, investigation of the mechanisms may well lead to further advances in treatments". So, thats good. I think.
Delphine M.A. Saulnier goes one step further by examining the role of 'Synbiotics', although I can't help feeling were moving into the realm of Marvel comics here (Venom anyone?). Unfortunately I was not allowed access to the lovely delphines article, but her conclusions were as follows: "Recent human studies indicate that ingestion of synbiotics modulates the gut microbiota, promoting a healthier composition; it appears that synbiotics can be more efficient than either pro- or prebiotics alone in inducing this effect. Preliminary results have shown beneficial effects on biomarkers of diseases such as ulcerative colitis (UC) and colorectal cancers." So, that also sounds good, though it seems probiotics might work better in conjunction with prebiotics... whatever they are. And whereever you get them.
And then, blow me, but I only went and found a video that sums it all up rather nicely here. I only watched up to the part where they start talking surgery, because I'm a wimp. But watch and learn people, watch and learn. (Although, I'm sure the old guy talks about 'good' bacteria like "e-coli" - huh? Doesn't that stuff kill people?)

In the end of course the only true measure of how useful these yoghurts are is my bum. And wouldn't you know it, today has been the worst its been for about 2 weeks. Still, I'm gonna stick it out a bit longer - I'll keep you posted.

Drug store woman

2008-07-07T22:18:00.002+01:00

I think I committed a crime today. And struck a small blow against 'The Man'. The system that stops me being able to be fully in control of my illness. I was driven to it though, m'lud. By a particularly unpleasant pharmacist and the kafkaesque nature of the NHS. And 'roid rage.

I took my prednisolone script to the chemist after school. I went to the Boots on my local high street, because I like the pharmacist in there. She once helped me out in the grips of agonising stomach cramps. I reckoned on her help because I had a problem. The old professor of rheumotology had written me a prescription for 150 preds, but he'd only gone and prescribed preds with enteric coating. Now call me deluded if you want, but 'enteric coating' sits in my file marked: NO! I can't remember why, and I realise this just adds to the irrationality, but at some point in the past I had to take preds with enteric coating and they didn't work as well. So, like admiting I'm feeling well and not saluting magpies, they have become anathema to me. Therefore I needed to explain this to my kindly pharmacist and with her help get the right pills that help me mentally too (never ignore the placebo factor). Unfortunately it was a new/different woman. So, I carefully, quietly and patiently explained the situation to her...

"Huh. You're the second one of these we've had today."
"Oh, sorry"
"Well, I can't change it. I can only dispense whats on the script."
"Yeah, but I NEED the non-enteric coated ones... they work better for me"
"Your doctor obviously doesn't think so"
"Yes, he doesn't normally prescribe them for me, I usually get them from my GP"
"You'll have to phone the hospital and get them to fax you a new one"
"But I've run out - I need them today. Can't you just give me the non-enteric coated ones please... please?"
"No. I can't give you a different drug to the one your doctor prescribed for you"
"But its not different - its prednisolone"
"No its not"
"It is! Its just got a coating on it"
"That makes it different - do you expect me to let everyone decide to take home different drugs to the ones their doctor prescribes?
"No. BUT ITS NOT DIFFERENT"
"You'll have to go to your GP"
"But getting an appointment there takes days, sometimes weeks - I don't have it on a repeat prescription"
"Well. You can have enteric coated prednisolone. But I'm not giving you a different drug"
"ITS NOT DIFFERENT!"

At this point I felt I could no longer hold back the 'roid rage. Fortunately for the pharmacist I had my youngest son with me. So I gripped the counter, counted to 10, took my script and left swallowing profanities. Now, at this point the red mist had descended and my moral compass was askew. I went back into Tesco, to the lottery stand. I used the pen on the stand to change my prescription. Not a high-class, sophisticated piece of fraud, just the simple scribbling out of the words 'enteric coating'. And then the boy and I walked up the road to the other chemist (the one where they dish out the methadone doses: I thought they'd be less perturbed by a shifty looking character...) where they cashed it in without so much as a by-your-leave. So, mwahahahahaha one-nil to me!

Just a final thought: possibly the best UC blog I have read - Number Two's - has come to an end. Reading Number two's gave me the confidence and impetus to start this blog, which in turn has helped me cope with the UC. I am glad that Martin is feeling well and hope that he stays that way. I look forward to seeing the return of such a witty and perceptive writer in a new form soon. Good luck Martin!

Please please please let me get what I want.

2008-07-05T09:52:00.004+01:00

"If music be the food of love, play on..." so spoke Orsino in Twelfth Night. Although he does go on to beg for an excess in the hope that too much will cure him of his need - a metaphor for his unrequited love I believe (but don't quote me, I'm not an English teacher). Without wishing to labour this particular point, it's the first bit of the quote that is relevant to me. Music has been a pillar in my life since my teens. It has been the post upon which I have hang important moments in my life; it has provided the soundtrack to the emotion of my life. We all have a soundtrack to our lives, external, internal and always changing.

That said, for as long as I remember I have had songs that live in my head. Some of these are permanent residents. Burnt into the electronic circuits of my brain. They are ridiculous: the theme tune to the 'Sullivans' for instance (a terrible 80's australian daytime soap). They are great: Danny boy (I love that song). These songs seep into to my consciousness and I find myself whistling them absent-mindedly. They are just there.

But, some are temporary visitors. They dominate my brain for a few days and then disappear back into the record cabinet of my mind. It is these that I often reflect perhaps best represent my inner thoughts. And so it was recently that I found my self repeatedly singing 'Please please please let me get what I want' by the Smiths. I have always been a sucker for a bit of melancholy and I know I can be prone to self-pity, but the sentiment of this song seems to fit an occasional UC state of mind I can get into. Sometimes this damn illness drags on and on. It drains you as you go. And sometimes, when I reach that low point, I do cast a despearte gaze around and bitterly think "Why is this happening to me? Why isn't it happening to that guy, or that guy? Why can't I just be 'normal' and not have to spend every waking hour wondering whats happening in my bowel? See, the life I've had could make a good man bad...". Of course, in clearer moments I can be wonderfully objective, count all my blessings, be humbled by inspirational people who face far greater troubles than mine with dignity and gravitas, and keep everything in proper perspective. But the other day I was down low, it was just me and the Smiths... Still, I always know when I'm really on a bummer, cos then I start listening to 'Exit music (for a film)' by Radiohead...

Don't worry though, because yesterday was a Kings of Leon day - until it got stuck in the CD player in the car and brought on the 'roid rage.

I know there's an answer

2008-07-01T22:06:00.003+01:00

I went to the Professor armed with questions. Here's what happened:

Firstly I had to have a pretend session with a medical student. I used to hate this - repeating the whole story from the start, watching them hopelessly try to keep up with all the queer anomalies and my own theories on whats happened. Now I feel like I provide a service for the future. The more young doctors that understand the individual nature of UC and all its associated symptoms, the less likely people are to come up against an inflexible old school consultant like my Gastro-doc. I've taken to writing my own 'notes' and this time I also took along photos of my inflammed feet (see 12th June). So I positively bombarded her with information. Eventually she gave up trying to make head or tail of me and went and got the prof.

As usual with Professor Rheumotology, I had a constructive and fulfilling appointment. We made these decisions:

1. My bloods are OK right now. This I managed to ascertain myself because the med student dropped the results from last week and I had a look at the old nitropyhlls and lymphocytes (I can't necessarily spell those though). Both within the 'normal' range. I also was able to assume an air of self-satisfied smugness by answering the profs question to his students (3 in the room with us!) about the purpose of TPMT's - an enzyme count to indicate sensitivity to immunosuppressant. Haha. Well done me.

2. Thus, with bloods OK, the prof suggested there is no need to rush into azathioprine yet. But he did give me another leaflet about it - I'll file that with all the others. He also suggested that azathioprine needn't be the inflexible 5-year course that is oft claimed on the 'net. Rather that it may be carefully monitored and used much more intermittently, when necessary, essentially to reduce reliance on steroids. So, there's a point to raise with old gastro-doc.

3. Seeing as they seem to be working well at the moment, I'll be staying on the prednisolone for a while longer. I did however learn something new here: as we all know steroids have to be tapered down to nothing (if you're lucky enoughto get that far). So, I usually taper by tablet, i.e. 20mgs one week, 15 the next, 10 the next and so on. What this rather dimmly ignores though is that by doing this you reduce your dose by 25%, then 33%, then 50% - in other words far too quickly. No doctor has ever pointed this out to me before. So, my new regime goes: 10mgs a day for another 4 weeks, then alternately 10 one day, 5 the next, then 10, then 5, for 6 weeks (therefore 7.5mgs on average), then down to 5 until I run out. Theoretically within this time I will have had the phantom appointment from Gastroenterology to further discuss azathioprine. The draw back here is the crappy pred side-effects. Unfortunately for a man weighed down by the evil sin of vanity my main side-effect are spots. And they are back in force. Oh, and shouting at people, but I dont mind that so much.

4. He also pretty much insisted that I start drinking probiotic yogurts on a daily basis. Surely 'bifidus digestivum' can't really be real can it? Oh well, I'll give it a go. And his nurse suggested to me I try Acidophollus tablets. Mind you, she whispered this to me as she escorted me out... maybe she shouldn't be trusted... "they keep them in the fridge cabinet of Holland and Barrett".

I'm waiting for the man

2008-06-30T18:01:00.004+01:00

To begin with lets talk polyclinics. Following my whole-hearted backing of said clinics I went on to watch a news report that outlined how they are a part of the systematic disassembling of the NHS. The report suggested that they would work on a patient drop-in basis, with a high turnover of doctors, thus reducing waiting times and continuity simultaneously. Now, while I was acclaiming the lack of waiting time for my blood test, the lack of continuity of care I have faced at my local hospital has been perhaps the greatest hurdle I have faced in managing the UC. There is absolutely no way that the family GP should be replaced by polyclinics. And so, unless I need a blood test, I will never go there again...

On to hospital matters. Tomorrow I have an appointment with my consultant rheumotologist. I have found him to be the best doctor I have dealt with. I have only recently been under his care, as I asked for a second opinion earlier this year, and was sent to him (due to the associated arthritic symptoms I suffer). I asked for this after repeatedly being at loggerheads with my gastro-consultant and his narrow-minded god complex. Below I have outlined a brief timeline of my colitis and the list of Q's I am planning to ask. I will report back tomorrow.

Timeline

2002 - symptoms begin

2003 - Largest flare-up (May), treated with Mesalazine, which probably made it worse. Hospitalised and treated with IV steroids. Discharged with Mesalazine and oral Prednisolone. Relapse, medication reduced to oral prednisolone. Flare-up ended.

2004/5 - Intermittent flare-ups of associated arthritic problems. Treated with Prednisolone

2005/07 - Management of illness through lifestyle changes (e.g. stopping drinking alcohol). Mild flare-ups. No drugs. Acupuncture.

2008 - February: hospitalised with pneumonia. Treated with high dose of antibiotics (IV in hospital, oral on discharge). UC flared up following end of antibiotic course, end of March. Prednisolone (30mgs tapering on a weekly basis). Flare-up while on 5mgs lead to extended course. Flare-up after completion (first in colon, then arthritic June 7th – 12th). Back on Prednisolone, tapering 15mgs to 10 after one week.

Questions:

How likely is it that this flare-up has been caused by the Pneumonia Antibiotics?
Would it be sensible to stay on a low dose of prednisolone for a while to attempt to get back to a stable situation (i.e. 2005 – 07)?
If yes, what would be the recommended course of action? Can you prescribe me enough prednisolone?
Gastroenterology want to discuss with me moving onto Azathioprine (essentially due to the recent flare-up following the prednisolone course in April/May) – what is your opinion on this?
So, should I be considering immunosuppressant now?
I believe Azathioprine has a maximum 5 year course – what happens if UC/Arthritis flare-up after that?
Is Azathioprine useful in the treatment of the arthritic symptoms?
Should it come to surgery, will this also end the arthritic symptoms?
And my wife wants to know if there would be any benefit of moving to a warmer climate?!

It's alright Ma (I'm only bleeding...)

2008-06-25T17:32:00.004+01:00

Yesterday I had a blood test. These are an occupational hazard for the professional UC sufferer. Christ only knows how much of my blood they took when they were still struggling to decide if I had an IBD or not. I'm a pasty looking guy at the best of times, but back then I was really rocking that 'heroin-chic' look... Anyway despite pints and pints of the precious red stuff being taken I have barely been able to approach them with even an iota of courage or masculinity. God, I hate it so much. I'm not a 'fainter', as the phlebotomist so succinctly put it, but I am a 'can't-look-fist-biting-panicy-almost-tearful-big-girls-blouse'. So, what was special about yesterday? Well, originally I was asked by the rheumatologist to go for the blood test in April. Knowing my innate ability to 'forget' to do these things I went straight over to outpatients to get it done there and then. However, up the hospital its a take a ticket and wait your turn system. Disturbingly they use the same tickets as the Deli counter in Tesco. I guess there are only a few ticket distributing machines available on the market - but I think they ought to go out of their way to find a different one. I took my ticket and realised I was number 90. The sign said next up was 48. I waited as long as I could, sweaty-palmed, becoming more and more agitated, starting to hate everyone in front of me. It is not healthy to displace fear into sociopathy, so in the end I chickened out and ran away.

Now, I'm due back at the rheumotologist next tuesday hence I finally had to bite the bullet. But herein lies the point to this post. Locally we have something called a polyclinic. Usefully it's very close to my school. I phoned them. They do bloods by appointment only. So I made one (mentally that meant I HAD to go) and off I went at 9.55 for a 10.05 appt. I was there slightly early, no one else was there: they whisked me in, bled me and sent me on my way. I was back in school by 10.05. I didn't even have time to consider what was about to happen. Admitedly I still had the shakes, heart-rate was up, nurse asked me if I wanted to "lie down", but, bloody hell, I felt much better about the whole affair. So it's they polyclinic for me from now on. I highly recommend them (though I don't know if they are peculiar to this area).

Tobacco Road

2008-06-24T20:41:00.003+01:00

I have just been reading the excellent UC blog 'Number Twos'. A comment on the most recent post raised the issue of smoking and UC. This is interesting to me because when I was first being investigated for possible UC, one question that I was asked was whether or not I had just stopped or cut down smoking. As it happened I was a smoker at the time and had been slowly cutting down for a couple of years. I was never a heavy smoker anyway, but I had more or less cut down to the level of a 'social smoker'. That'd be a social smoker who wasn't out smoking all that often. My doctor at the time (a youngish SHO who was very good, better in fact than my subsequent consultant - I wonder what happened to him?) outlined to me the theory that reducing or stopping smoking may have some as-yet unexplained link to the onset of UC. He also suggested in hippocratically-motivated couched terms that I think long and hard before I give up for good.

Conducting a brief survey of research papers available on the internet reveals studies dating back to before 1997 relating to the possibilty that nicotine may have some effect in reducing the activity of UC in general, or even the immune system in particular. Now, clearly I'm no expert but there appears to be an awful lot of circumstantial evidence for this to be utterly without foundation. There are, however, quite a few occurances of the old "patients responded just as well to the placebos" though, which is always disheartening. That just makes me wonder again about the role of the old prednisolone in my own strange UC world. Somewhere or other I found a research paper on the use of nicotine patches in UC sufferers - I've lost the link, but when I find it again I'll stick it up on a post.

As for my own smoking. Well, I still do. Not much, too little in fact to ever fit into those little medical surveys you have to do from time to time. I reckon it must average out at less than 1 every 2 days. Usually I only smoke when I go down the pub. Which is sadly none too often these days. I occassionally go through a little stage of having a cheeky one in the back garden late at night. And all the while I puff away, evil Nick-o-tine whispers in my ear: "Thats right. Its making you all better..."

Head Cut

2008-06-21T15:21:00.003+01:00

A quiet week. Year 10 are on work experience, the 6th form and year 11 have finally finished all their exams so they are enjoying that lengthy seminal summer of their lives, in the first flushes of young adulthood. So I took the opportunity to have a meeting with my new Head. Unlike Worzel Gummidge, for whom this would mean a illicit meeting in some potting shed with the (deeply creepy) Crowman, this meant traipsing all the way down to the other end of school and hanging around outside her office like some chastened schoolboy. Eventually I gave up waiting (my appointment time having passed) and knocked and went in, only to interupt her in mid-flow with some other officious looking peeps. Good start. It was so much easier with the old head: if the door was open, go in, if closed wait at all costs. Having said that he was an inscrutable old bugger, meeting him was not unlike being grilled by a particularly dogged barrister. He always made me feel guilty for crimes I had not committed. Well, mostly not committed. He was, however, very supportive over the UC, diagnosis having arrived shortly after I'd joined the school. And to be honest I had no reason to doubt a similar reaction from the new Head, she seeming a much more personable character so far.

So, having broken up her previous meeting, I went in and had THE chat: 'I've got a chronic illness called UC, with a nice bit of associated arthritis on the side'

Now, why had it taken until June to have this chat? Because until March all was lovely and therefore I'd 'forgotten' about it. And having built up quite a large number of absences since the pneumonia in February, I couldn't help thinking she might well have decided I was a malingerer. As it happened, it all went well. She made the right sympathetic noises, promised me the school would support me in any way it could, made me promise to ask for help when I needed it, etc etc. All hunky-dory. Untill... virtually as we were bringing this short but constructive meeting to an end, we had this passage of converstaion:

Me: Well, thanks for listening

Her: No problem, thanks for being open. Your health is important. Keep me posted if anything changes.

Me: Yeah, I will, hopefully the drugs will damp things down again.

Her: Good. And then if you start to have too much time off, we'll have another meeting.

Me: !!Oh! Right, ooookkkkkk...

Her: Close the door on your way out...

What the hell does that mean? 80% of me reckons she meant well, you know - if things deteriorate we'll meet and review what can be done. But the rest of me felt like that was a shot across the bows. It can't be great having a chronically ill person on your books. Maybe she's one of those cycnical people who, having never had to cope with constant ill-health, treats those of us who do with suspicion. Maybe I'm just guilty of thinking about it too much, as usual.

Anyway, 15mgs of pred daily this week have kept things settled. Been around 2 or 3 on the old bristol chart. Feet fully back to normal.

Oh. and I appeared on Youtube for the first time!

Weekend

2008-06-17T22:11:00.004+01:00

This weekend presented two challenges to the man in the grips of a UC flare-up: a trip to the cinema and a barbeque (not simultaneously). Two relatively straight-forward weekend outings one might be fooled into thinking, but just another pair of high-hurdles in the 110m of UC-governed life.

1. The cinema: after weeks of promising the kids I would take them to the pictures to see Indiana Jones and the Whatever George and Steven Thought Of, I finally relented. This was undoubtedly a fatherly duty. Indy, presents no attraction to my goodlady, not even in a world-weary-quipping-rugged kinda way. Now this trip presented issues to be planned for on several fronts (including packing the spare pants). Firstly, the bus. There is no point in driving into our city centre at all on a saturday. You may aswell park your car close behind another and sit staring at it for a couple of hours. So, the bus it is. And very good buses they are too. But they have no loo. Neither does my car, but at least I dont have to share it with strangers (including the inevitable kids form school) in times of dire need or worse. So, there was public transport anxiety. Secondly, the cinema itself. There is, of course, the obvious issue of having to use the public toilet. This is something we have to quickly come to terms with. Sadly it is not something I am comfortable with yet, even after 5 years. Its not the noise, or the smell... its my troubling obsessive-compulsiveness. I have to lower seat with my foot: I could not possible touch it! I have to paper the seat! This can make for a fabulously amusing spectacle - well, I make the asumption that should anybody be able to see a man frantically trying to lay paper on a loo seat whilst simultaneously, desperately trying not to let go too early would be amusing. Ah, imagine that contorted body now! Indeed I have often felt relief-tinged amusement myself as I've finally plonked myself down only to waft all the paper off at that instant. That would be relief-and-revulsion-tinged amusement... However, the main issue is what to do with the kids should i have to suddenly make a quick break for the loo? My youngest (8) is arguably too young to leave in there alone - I think he would get frightened, especially if it was one of those longer visits. And yet, I might suggest that having to accompany me may be even more truamatic, and I'm not talking about missing a bit of the film...

2. The Barbeque: how do you go to someone else's house for a barbeque, expressly for a barbeque, and then snub over half of the food. I resent looking like some picky fool who doesn't enjoy his food, because that couldn't be further from the truth: I bloody love eating. But as the burger (homemade by my host) was hanging tantalisingly between my lips, someone mentioned chilli. "Aaaaaahhhhh, I cant eat this" I think, and thus slowly remove it from my mouth and place it back on my plate. Unfortunately this is not unnoticed: "Wots wrong with the burger?" "Oh, er, nothing. I just cant eat chilli right now." Only its been in my mouth so neither can anybody else now. Cue suspicious stares etc. Followed later by the same old 'what do you want to drink' conversation. Joy. Incidently I also had to forego the olives, homemade relish, houmous, amongst other things, leaving me sausages and salad. Great.

Having said all that, the preds have kicked back in again and the flare-up is dying down. I went up to 15mgs on saturday and have stayed there, but I guess that's still quite low. Planning to bring it down to 10mgs next saturday and then hold out until I see the consultant rheumotologist on July 1st. Still waiting for new appt with Digestive Diseases.

And now there is a man eating Italian cheese with maggots in it on TV. Why hasn't he got bowel problems?

Oh, and Indiana Jones... disappointing. That magic aint working any more. How depressing.

Something changed

2008-06-13T23:00:00.003+01:00

"I think, and I stress the think here, that I prefer hobbling around like an old geezer than rushing to the loo and pooing through the eye of a needle throughout the day. But I reserve the right to change my mind on that regularly and without reason."

I begin with a quote from yesterdays post. Why? Because the UC has already insisted that I reflect on that statement. Two days back on the steroids (10mg a day) and the foot/ankle swelling has reduced enormously - goodbye flip-flops, hello again shoes! They're still very sore and my calves have got very stiff, but defo on the mend. All good eh? Nope. At 4.30am I was awoken by excrutiating stomach cramps and had to rush-hobble to the loo. Nothing happened. 6am, same awakening, this time with some outcome: loosish poop, say a number 5 on the old Bristol chart (why does Glasgow get coma, while Bristol gets stools?). Bloody hell, I was supposed to be going back to school today. I did go back and there have been 4 or 5 (lost count) further visits, following cramps at about 5/6 on the chart (mmm 'fluffy'). Damn it.

So, at the moment, I have decided that I absolutely still agree with the above statement. There is more dignity in hobbling, and it is easier to endure than stomach cramps and repetedly running to the loo. I think I might up the dose tomorrow, maybe 15mgs?

As for school, that was OK, lots of well wishers and a few fools who asked me how I was. Mwahaha - I soon bored them to tears with a full account of the current situation: the UC story never comes in small chapters...

One step beyond

2008-06-12T15:57:00.003+01:00

Here I am, Captain Bligh-like, cast adrift again on the UC (clever, eh!?) whilst my Fletcher Christian of a body chuckles from the bridge of the Bounty...

A tortured analogy/metaphor to describe my current status. Having blind-sided me all weekend by hinting at new pneumonia, I had almost stopped thinking about the UC. Until, that is, Monday when the cold started to subside, and I started to feel a little better: ahhh, yes breathing normal, no lung pain, no coughed up nasties, no feverishness... yep, I'm feeling... well! Wait a minute, what's this? Agonising cramps? Dashing to the loo? Aha, of course! What was I thinking? Of course I'm not well. Bugger.

However, that was not the end. My body always has another little trick up its sleeve... like a cheeky Paul Daniels: "You're gonna like it... but not a lot..."

The cramps and toilet-dashes did not develop over Monday, leading me to believe I may had a little cold-induced aberation to my continuing improvement. Then when I got home from school I noticed a dreaded 'red-spot-type-thing' on the back of my leg. Then I found a little swelling (on my leg - it's not THAT type of blog). Then another... By tuesday morning, they were worse, but not awful, so I manfully went to school anyway. Manfully, but stupidly, wore my normal boots. By the end of the day my feet were threatening to tear open my shoes in a Bruce Banner moment. My left foot had started to swell underneath, making every footstep agonising. Excacerbated by hundreds of little lovely children: "Wotchya dun sir?" "Whyyer limpin?" and the bastard stairs to my bastard classroom. Oh, and having to stay until 8pm for parents evening. By the time I got home my feet were as the pictures above show. And ankles - they don't normally look like that. Honest.

So, I stayed home Wednesday and today. Phoned my GP to ask for a prescription for more prednisolone (checked packet - only 3 left - would have had to have stopped last week anyway). Couldn't speak to my usual Doc, who does at least vaguely recognise me, so no prescription without being examined first. I seemed to make this obstructivist attitude worse by asking if the doctor could make sure she prescribed non-enteric coated preds (enteric coating seems to make my symptoms worse - or this could just be more psychological madness), which she seemed to get really suspicious about. Anyway, after seeing me and hearing me demonstrating huge knowledge in my own condition and managing it, agreed to give me the drugs. Which means I'm back on the preds and self-medicating at 10mgs a day.

A mixed blessing all this. Whilst the arthritic thing is painful and makes me immobile, and in winter means no football, it usually brings an end to any bowel-related symptoms. I think, and I stress the think here, that I prefer hobbling around like an old geezer than rushing to the loo and pooing through the eye of a needle throughout the day. But I reserve the right to change my mind on that regularly and without reason.

Paranoid android

2008-06-08T19:04:00.003+01:00

Its a beautiful weekend, the sun has been shining, Euro 2008 has started, England have won the cricket convincingly... can i enjoy it? No. Because I have spent the whole weekend rapidly descending a spiral of paranoia. And for once it's not UC related. Well, I say that, but i wonder if the underlying reasons are actually to do with living with a chronic disease.

At best, I would say that UC has made me a more reflective and conservative person. In many ways I am a far healthier person. Healthier that is, except for my colon, joints and... the fact I'm increasingly becoming a mentalist. I'm guessing that I would be typical of most chronic illness sufferers in that I am much more introspective than I ever used to be. I pretty much consider the consequences of every thing I do and, especially, eat. I literally cannot do anything on a whim or impulse any more. Virtually every decision I make is preceeded by the thought: "mmm, how will that affect the UC?". And I can talk myself out of anything on those grounds. I spend all day every day weighing up the relative importance of every twinge in my stomach and every bump or lump on my limbs. I have to constantly fight with myself to prevent my becoming utterly superstitious and reading portents and omens in everything. For instance, I can rarely bring myself to admit out loud that I'm feeling OK, and things are quite settled... that would be tempting fate. And, of course, I have to salute every bloody magpie that I pass. See, MENTAL!

So, it is with this crazy attitude that I have struggled through a weekend in which I have developed a cold. I'm afraid I am beyond the stereotypical man-flu archetype. Oh no, sir, no simple influenza for me. I had a particularly nasty bout of pneumonia in february and was hospitalized for a week (HA! as if i dont see enough of that place as it is) - it was horrible. I thought I was going to die. But I didn't. In fact I very much got better (another 6 week spell off work, but it must made a change for them to write pneumonia instead of UC on the paperwork. Incidently, 'hilarious' rumours spread among the kids at school like wildfire: cancer, AIDS... amputation!?). However, as a sniffle developed into a cold, and then moved down on to my chest, it has been terrifyingly easy for me to convince myself that IT'S BACK - I'M GOING TO DIIIIIEEEEE OF PNEUMONIA. God, I have spent hours breathing deeply to pinpoint any chest pain. I have tried repeatedly to take my own temperature - without a thermometer - "Oh Christ, I feel really hot..." yes, it's hot and sunny out today, you idiot. And most grotesquely I have developed a disgracful new habit of ejecting anything I cough up to inspect it for anything nasty (this has to be an extension of religiously examining poo). I don't even know what I'm looking for. Somebody heeeeellppp me...