For NCOT

Hey bro/pro. You know I never I miss a thread with my name in it :p

I didn't realise you still had your rectum. UC/diversion colitis isn't giving you any issues? When I had an ileo, I developed diversion colitis in my rectum. It wasn't severe and I was assured it wasn't Crohn's (after takedown surgery: "It may have been Crohn's!"). But it did give me a few issues which, while they slightly bothered me at the time, now seem absurdly easy. All the same, if I do go back to an ileo, the rectum is going as well - I'm definite on that. I won't be giving a reversal a second try.

And I'm considering going back to an ileo. I doubt I will lose more than a few centimetres of small bowel, so I'm not too worried about that. I'll know more when I get my small bowel MRI results back, but my GI isn't expecting it to show anything. He thinks the problem is contained to the rectum and very end of the small bowel (it was actually my surgeon who ordered the scan, not him). Anyway, I'll find out soon enough. The results should be back by now, so I'm gonna chase them up tomorrow.

In the meantime, I've had an offer to go out to Spain for Easter. If I was in good health I'd absolutely love to go - it's been years since I've been on holiday. I think I will go, but I will try to get a course of steroids beforehand that I can take with me. Not ideal to put it mildly. I also need to start seriously thinking about a maintenance med, and not the freaking useless mesalazines either. I'm not keen on going back on immunesuppressants, but there is a possibility they may work now that my Crohn's is "mild" and no longer trying to kill me.

I won't spend years faffing about if I don't see a major improvement fairly soon though. I'm on the borderline as it is. Apologies for the essay, bro - I'm off to dash to the supermarket before it closes now. Thanks for the good vibes :)

Yeah, passing mucus was my main symptom too. If I sneezed or coughed I had the occasional mucus accident, plus the occasional bout of tenesmus or urgency. But nothing, nothing like what I'm currently going through.

What pisses me off is how little mesalazine intolerance is known about. I'm sick to death of doctors who have never heard of mesalazine intolerance patronising me about it. No, I'm not exaggerating my symptoms or making them up - when I say they make my symptoms worse, I mean exactly that. There is even some evidence that mesalazines cause inflammation in those who cannot tolerate them: if I can find the article again, maybe I'll print it out and hand it to my GI.

I don't think it's a bad idea to prophylactically remove the rectum. It's not serving any useful function and it removes any future colitis-getting-worse or cancer risk.

Best of luck to you too. Long may your ileo continue to be rock solid.

Passing mucus and having urgency is completely common/normal. Even people who never had IBD will develop diversion colitis in a diverted rectum or colon that no longer has stool passing through it, and the symptoms of diversion colitis are pretty much the same as UC - just usually milder.

I think you are very wise not to have a reversal if you have a fistula and possible Crohn's. The only reason I chanced a reversal with Crohn's was because I'd never had fistulas or perianal disease, and my rectum was largely unaffected (until now! :-/) Fistulas don't automatically mean Crohn's - it's possible to have fistulas without having Crohn's - but frankly I wouldn't touch a j-pouch with a bargepole if I had a fistula for any reason.