Deciding on Ileostomy Reversal: Seeking Advice and Experiences

I had an emergency ileostomy two years ago due to complications of Crohn's disease. My surgeon explained to me that my ostomy was only ever meant to be temporary, and I now need to make the decision to reverse it. I am reluctant to have further surgery, as my quality of life is so much better, and I cope well with my stoma. If I keep my stoma, will I need to have my colon removed? I have heard that an unused colon can cause complications. Has anyone experienced this?

G-Day,

If you are going to stay with your ileostomy, it might pay to talk with your surgeon and see what he says. Personally, I got my whole colon removed and also got my butt stitched up, a Ken butt. It eliminates any chance of colon cancer or butt cancer.

Regards, IGGIE

I too was told I could be reversed but opted out. After reviewing the downsides (% of returning to normal), I decided I could live with my stoma… it does have some benefits. As far as I know, my colon has quietly gone into some kind of hibernation - it's 5 years this month, and so far no problems, and I am hoping it stays there. Of course, I am almost 82 now, and my attitude remains the same… no hospitals/docs unless I am in pain. Hoping my hibernating colon outsleeps me! jb

I hope someone with a history of Crohn's will weigh in, but it seems to me that if you have your colon hooked up again, all your Crohn's issues will still be there, right? If you are functioning well with your ostomy, and your quality of life is better, why mess with a good thing? I have a different situation from you, no history of Crohn's, but for other reasons have chosen not to have a reversal. My life is better now than pre-ostomy, so I'm sticking with it.

Terry

Hi,

I have a permanent loop ileostomy after nerve damage and a host of issues not related to Crohn's. My surgeon offered it to see if it would help solve all the other issues I had at the time. She explained that if it is functioning well and not causing issues itself, then it could just be left as is. There is no increase in risk for cancer or other issues just by leaving your colon in place long term. I was told I could have it removed and change to an end ostomy, but since that is another surgery or two, I don't have to at all. You will still have to do colon cancer screenings via colonoscopy instead of the newer and easier fecal tests, but at least there is no prep, which was the worst part. I'm not sure about the possible risks or issues long term with Crohn's itself if your colon is left in place, though. My ostomy certainly made my life much better.

My Ostomy Journey: LeeAnne | Hollister

It's October now. What did you decide to do?

No decision yet, but I'm swaying towards keeping my stoma. I've read all the reviews from ostomates who have had a reversal and have had complications. I think I would rather have control over my bowel movements. I'm seeing my surgeon again in December and have lots of questions, thanks to ChatGPT.

I have Crohn's and have had mine for 20 years. I'm just now considering a reversal, but I'm not sure if I should do it. I was told I could get a reversal after 3-6 months, but I never went back to the doctor to get it done. I guess I was scared of my Crohn's symptoms coming back.