Tuesday, 28 April 2009

Almost cut my hair.

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

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

For me, prolonged use always precipitates the growth of the beard. I don't mean that I benefit from some kind of super-facial-hair-growth induced by the steroids. Sadly, the beard appears through personal vanity. It hides the inevitable steroid acne. Well, most of it. On my face. It's a hard decision: beard or acne? But after many years of pondering, the beard has won out.It looks something like this (pretty poor I'm sure you'll agree...)
And, yes, I am a geography teacher too...
Other than facial. This is weird: a few months ago (maybe 10 or 11) it started to fall out - or seemed to be falling out. When I washed it there would be far more hair in the shower than normal. Was it the steroids? Somebody (IBD Nurse) once told me that UC could lead to hair loss... but I've never read/seen that anywhere else. Anyway, it stopped. But now it has started again. And my hair's a bit longer, so I notice it more. There's still plenty left, so I'm not unduly worried. Yet.
Used to happen alot - days of choking back a huge knot of bilious rage burning inside me, literally looking for someone to start an argument with. Or taking it out on the wife and kids (just general shouting, no violence or anything). Nowawdays it comes and goes. Most of my friends are used to me ranting anyway, so this is just added amusement. The family don't have to suffer too often any more, though it does get the wife down sometimes. It is really very difficult to control. A couple of weeks ago I went into M&S to buy some pants. They are always all packaged up which makes it very difficult to judge how comfy they might be. So, I unpacked some to have a closer look. Whilst inspecting I noticed I was being watched by a very haughty looking M&S woman. She was probably well within her rights to keep an eye on the bearded weirdo unpacking pants but, before I could think the rage boiled, the red mist descended and I found myself thinking "COME ON THEN BRING IT ON COME AND HAVE A GO AT ME COME ONNNN..." and feverishy unpacking several other packs of pants... Fortunately the wife was there to drag me away before I had disappeared under a pile of tasteful boxers.
Another symptom that comes and goes. On the whole this doesn't bother me. Until somebody points it out. Then I feel like some old gimmer...
Moon Face
I think I've got away without this one so far... Oh god, why did I type that?
This is difficult to judge. Firstly, it is unclear to me whether steroids make you gain weight through water retention or increased appetite, or both. My usual healthy weight is about 12 stone (i'm 5'11") and I have pretty much flucuated around this mark for the past year. I lost a lot of weight when I had pnuemonia last feb, but got it back and have kept it on bar losing a few pounds here and there to the UC. This has perhaps helped to hinder any massive steroid ballooning. God knows that I have felt the effects of appetite increase. There have been days when the only thing stopping me eating everything in the house is that I have eaten everything in the house. One benefit of being on the steroids all year is that I haven't had much problem with the arthritis, so I've been able to play football much more regularly.
Those are the main side-effects in my steroid world. And this is the problem. If you ask me day-to-day which I would rather negotiate, symptoms of UC or the side-effects of the prednisolone, to me it's a no-brainer. If i could just get it down to 5 mgs a day again...

Friday, 24 April 2009

If I have to go.

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

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

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

Tuesday, 21 April 2009

Its a mystery

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

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

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

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

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

Sunday, 19 April 2009

Another one bites the dust.

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

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

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

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

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

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

Thursday, 16 April 2009

News of the world

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

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

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

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

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

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

Wednesday, 15 April 2009

Something in the air

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

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

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

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

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

Tuesday, 14 April 2009

Chocolate Jesus

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

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

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

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

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

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

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

Saturday, 11 April 2009

Heartattack and vine

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

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

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

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

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

Wednesday, 8 April 2009

Doctors and Dealers

Three points of interest today.

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

He's not green, and clearly does not conduct his consultations just wearing a pair of shredded pants, but he has the same square face and bulky, gym created body. Perhaps he stood too close to the X-ray machine in med school. Whatever, I try not to make him angry...
Secondly, I went to the chemist (again - they eye me suspiciously, perhaps rememering the massive bag of drugs I brought in yesterday...)to pick up said preds, and I encounter two note-worthy things:
2.1 (I'm sub-dividing the the chemist based observations to ensure it adds up to the promised three points of interest) - my steroid prescription was written up to indicate the tapering I have to do as I increase the dose of the other stuff, the target being to stop taking them. With this in mind then, I was amused to find the chemist insisting I take a 'steroid card' - a card to carry about your person in the case of a medical emergency, thus informing paramedics, doctors etc that I am on steroids which must not be stopped immediately. This was a source of amusment because a) I have been on them for a year or so (plus several other occasions in the past) and nobody has ever even mentioned this card to me, and b) they just printed out a label that clearly shows I have to taper the dose, i.e. I'm about to stop taking them. Doh!
2.2 You can get sugar-free methadone! Whilst waiting I listened in to the pharmacists converstaion about what was in stock. There was some consternation that they had run out of sugar-free methadone and only had the the good-old sugary version left. Surely, surely, people trying to get off heroin don't care whether their methadone is calorific or not? Or are they worried about their teeth?

Tuesday, 7 April 2009

Chemical World

I chickened out of starting the new stuff.

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

Hmmm, that seems quite a few. And includes:

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

And also:

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

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

Monday, 6 April 2009

Knock on Wood.

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

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

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

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

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

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

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

Saturday, 4 April 2009

God Only Knows.

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, 1 April 2009

You gotta fight for your right to party.

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

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

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

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