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...
Embrace the Suck
1 month ago