Thursday, 31 December 2009

Ding Dong Merrily on High

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.

Wednesday, 23 December 2009

Walking in a Winter Wonderland


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...

Wednesday, 9 December 2009

Floral Dance

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!):

Wednesday, 2 December 2009

Here comes the Nice

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...?

Tuesday, 24 November 2009

Too Much Too Young

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.

Monday, 9 November 2009

If you're feeling sinister

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.

Sunday, 25 October 2009

Train in Vain


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.

Thursday, 15 October 2009

Teach Your Children

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...

Sunday, 11 October 2009

Nine to Five

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...

Sunday, 4 October 2009

Red Letter Day

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.

Sunday, 27 September 2009

Music for airports

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.

Sunday, 20 September 2009

Whatever you want

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.

Wednesday, 16 September 2009

I want to break free...

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.

Friday, 11 September 2009

Its about time

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...

Thursday, 10 September 2009

Positivity

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...

Friday, 4 September 2009

Just Because

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?

Monday, 31 August 2009

The Blood

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...

Thursday, 27 August 2009

J'N'Attends Plus Rien

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.

Thursday, 6 August 2009

TV Eye

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:


Tuesday, 4 August 2009

I Believe in Miracles

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?
  1. Despite suggestion to the contrary, the gut cannot be trusted as a decision maker. Especially not mine.
  2. 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.
  3. 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.
  4. People who write about the 'second brain' struggle to soundly argue its existence scientifically.
  5. If it's miracle cures you're after I prefer the sound of these two chaps found by Martin over at Number Twos.
  6. MOST IMPORTANTLY OF ALL: I STILL CANNOT MAKE UP MY MIND ABOUT INFLIXIMAB...

Friday, 31 July 2009

Space Oddity


"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...

Monday, 27 July 2009

Torn

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!)?

Tuesday, 21 July 2009

Helter Skelter.

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':

Monday, 13 July 2009

Sittin' on the dock of the bay

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...

Monday, 6 July 2009

Home again.

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?
  1. 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.
  2. 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...
  3. Attempt not to eat too many olives despite them being tantalisingly close at hand every single day...
  4. 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.
  5. 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.
  6. Release build-up of inevitable stress by shouting at ridiculously ill-mannered and ill-behaved kids at least once very day.
  7. 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!

Sunday, 28 June 2009

Vive Espania

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..."

Friday, 26 June 2009

Nervous breakdown

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...

Saturday, 20 June 2009

Curved Air

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.

Tuesday, 16 June 2009

Camp

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.


Tuesday, 9 June 2009

Causing a Commotion

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...