Had total colectomy doctor said crohns was not in my small but will it return there

Your GI is right. Crohn's does tend to follow a pattern and it does tend to re-appear at the same spots. So if you've had Crohn's colitis for years without any small bowel involvement, it is probably unlikely you will develop small bowel disease in the future. However, that said, there aren't any guarantees. Some people are just unlucky. Hopefully you won't be one of them but there is always that possibility you are and the Crohn's returns.

It's a good idea to get your rectum removed eventually, if you have no intention of being reconnected. There's no rush, but a defunct rectum does more than just sit there and gather dust - it can develop diversion colitis or Crohn's and, in the long term, is a cancer risk. If you start developing urgency and passing mucus or blood, your rectum is almost certainly inflamed. You can treat it the same way you would normal proctitis: with mesalazine or steroid suppositories.

I had a colectomy five years ago, but like you my rectum was left. It was fine for a few months but eventually I started developing symptoms of diversion colitis, i.e. urgency and daily passing of mucus and occasional blood. I had a flex sig where biopsies were taken and I was told it wasn't Crohn's. Partly on that information I had a reversal, but it was bollocks: the Crohn's returned almost straight away. I would probably have elected to have stayed with the ileo if I knew what I knew now, but I'm not in dire straits so I'm carrying on as I am for the time being. If I do go back to having an ileostomy again, though, my rectum is coming out as well. I've had enough of problems in that area to last me a lifetime.

As for small bowel disease, I've always had that so the fact it's come back in my small bowel as well as my rectum isn't a surprise really. At least it's in a relatively small area :-/

Do you know if having my rectum removed could trigger crohns ? i dont like to keep it really but more surgery is not a nice thought and as i have been told by my gi that reconnecting things could make my crohns come back im thinking is any operation to the bowels a risk for crohns coming back,, my ileostomy needs redoing as it has a hole in it which isnt meant ot be there

I have the same issues as you, I had to have surgery on the 27th, it was supposed to be j pouch but they are still unsure whether it’s crohns or UC, so I think I am just sticking with a permanent ileostomy, I too am kinda scared to get the rectum part removed, I don’t want it to mess anything up, my doctor told me I didn’t have to decide now though that I could wait as long as it’s checked for cancer. As for the nurse saying that your stoma looks “crohnie” I’m pretty sure everyone’s aromas are different and that she maybe has another patient with Crohn’s that has a similar looking one to yours? I am not sure about that!

I have Crohns Colitis, diagnosis at one time UC, confirmed Crohns from pathology after my resection. I never had disease in my small bowel in the 18 years prior to surgery. Because of that my GI has me on no medication. My rectum was severely diseased, plus I had a rectovaginal fistula so my surgeon took out my rectum at the same time as my colon.

I was really worried about that part of the surgery. It wasnt nearly as bad as I thought t it would be. I have had some minor issues with sex post surgery, but from what my surgeon told me, part of that might be from the vaginal fistula repair not because of the rectum removal.

I also I have no idea what your stoma nurse meant by crohnie stoma.

NiceCupOfTea said...
No, having the rectum removed won't trigger Crohn's. You're not joining it to anything, so there is nothing to trigger.

I dunno what your stoma nurse means by a stoma that looks like a Crohn's stoma - all stomas look roughly the same. I presume she's referring to the hole, which could be a fistula or a separation of the stoma from the skin. I would ask the colorectal surgeon to explain what the hole is and why your ileostomy needs re-doing. But stomas can develop mechanical complications that have nothing to do with Crohn's.

last time i told the surgeon about the hole he didnt believe me,, this time im hoping my stoma nurse will be at the appt i have later today to explain it to him ,, its so stressful i am worrying i have crohns again but maybe all this extra gas an noisy tummy an extra output is because im stressed,, i have to ask the surgeon about this but i dont suppose he will know as he is just a surgeon