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 hsdinfo@u.washington.edu 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.