Hello. Next Thursday, I am having my rectal stump surveillance endoscopy, which seems to happen every two years. I always get extremely nervous about this despite not experiencing any symptoms of my previous ulcerative colitis down there ever since getting the ileostomy back in 2014. The last test I had in 2022 confirmed nothing apart from disuse proctitis, but there were no sinister features. Still, me being me, I am always terrified of them finding something down there despite the absence of any active symptoms (just the odd bit of mucus discharge but no bleeding or blood). I was just wondering, as I approach 10 years with the ileostomy, has anyone left the rectal stump in situ without getting their bowel reconnected as my surgeon has said that both procedures (getting it reconnected or getting the stump removed) are quite big operations and that I prefer to be just as I am with regular surveillance. I mean, has anybody just left the rectal stump there for many years and not experienced any bad effects? I don't really fancy having more surgery and just wondered if there are any other ostomates out there who have lived with the rectal stump in place for 20 or 30 years or longer and not had a problem with it?
Hello gogogasnewydd.
My surgeon said precisely the same thing about these procedures being quite big operations and he advised against going down that route. That was many years ago and I have lived with the rectal stump ever since. I have never had an endoscopy , so I don't know for sure if everything is okay, but generally it has not given me too much trouble apart from mucus.
There are occasions when I have pain but if I ignore it, it goes away on its own.
I suppose it depends on what was wrong before the stoma. In my case there was no disease, but a severe prolapse. Hence, when there is some pain, I assume it is still prolapsing occasionally. Unfortunately, I think the same thing is happening to the rest of my colon, so the rectum is the least of my concerns.
There is no way that I would consider major surgery unless it seemed absolutely necessary.
But, this is only my opinion and these things need to considered after consultation with medics who know more about these things.
Best wishes
Bill
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I had my ileo done in 2016. The large colon was completely removed, leaving a 6" stump for reconnecting later.
Proctitis from disuse developed.
No kidding? It's a dead organ or becomes one over time.
But the kicker was mucus with blood was constant. A scoping revealed Crohn's present.
After unsuccessful meds for 6 years, and the possibility of cancer, I had a Ken butt done in Oct. 2023.
Am recovering presently.
It is major surgery and sometimes fallout afterwards, stressing sometimes on your other underlying health issues.
IMO... if it ain't broke, don't fix it. Unfortunately, in my case, it was not broke but leaking. A lot... embarrassing... very...
You need to research pros and cons.
That info can be found here from live and living members with it.
Not doctors... they speculate and... 🤞.
Another important factor besides your medical history, cancer, leaks, etc... is your age.
You will recover faster at a younger age than later being older.
Good luck. Questions? Ask...
Oh, and remember no two people
are the same with any condition.
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Hi Gogoganewydd,
I had emergency surgery in 1995 due to severe UC and toxic megacolon. I was given an ileostomy, and the rectal stump was left in for reconnection later. Once I was recovered, I was so happy with how good I felt, I never went back to be reconnected. I had proctitis off and on over the years but nothing too serious. In Canada, they like you to have a scope every year to make sure there are no problems. Fast forward to 2021, and my scope revealed "abnormal" cell growth. I had some discussion with the surgeon and decided it was time for the "Barbie" butt. It is major surgery, but thankfully I had no complications, so recovery went well. It's funny, I never wanted to take time out to have reconnection surgery and go through all the recovery, but I'm glad I got my Barbie butt. I have peace of mind and no more scopes :)