Saturday, 5 June 2010

Search, Search, Survive.

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 or via phone at (206) 543-0098.

Thursday, 20 May 2010

Blue eyes cryin' in the rain

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.

Tuesday, 4 May 2010

Feats don't fail me now!

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.

Thursday, 22 April 2010

The Real Me

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.

Tuesday, 13 April 2010

The Look of Love

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!

Friday, 2 April 2010

Boom! Shake the Room

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...

Monday, 29 March 2010

Ride the wild surf.

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.

Monday, 22 March 2010

Sunglasses After Dark

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:
  1. 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..."
  2. 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.
  3. 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.

Tuesday, 9 March 2010

Torn and Frayed

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...

Thursday, 18 February 2010

A Hazy Shade of Winter

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...

Tuesday, 9 February 2010

Who's gonna shoe your pretty little feet?

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...

Tuesday, 19 January 2010

Little Drop of Poison

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!

Tuesday, 12 January 2010

What difference does it make?

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?"
"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."

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?"
"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'.