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.
Embrace the Suck
1 month ago