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!