Tuesday, 28 April 2009
Friday, 24 April 2009
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
Sunday, 19 April 2009
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
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
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
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
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
Tuesday, 7 April 2009
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:
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.
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
- Forgive me, but right now, I dont need surgery - I'm not gloating, but I am still enjoying typing that.
- 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
Wednesday, 1 April 2009
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...