Concerns About End Ileostomy Reversal with Limited Large Intestine

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Willhb3
Jul 13, 2025 1:11 pm

Hi! My wife has been scheduled for a reversal of her end ileostomy in August. Her small and large intestines got stuck in scar tissue in January, and she lost 2.5 feet of small intestine and all but 11 inches of large intestine. With so little large intestine left, she is concerned about the success rate. She is worried that she may have to go too frequently and that it will be loose all the time. Does anyone have a similar story, advice, or results you would like to share? Thank you in advance!

KellyTX65
Jul 13, 2025 1:46 pm

I don't have the answer for you because I am very shortly going to have the same reversal surgery. I see my surgeon this Tuesday afternoon to discuss my surgery. This is one of the main questions that I have also. Am I going to need to worry about having accidents all the time or have to wear Depends “in case”? When I feel the urge to go, will I have only seconds to get to the bathroom? What about being out and about? Will I need to worry about going places? I went through so much of this before they finally discovered what was causing all my problems, and I don't want to have to live like this again. I couldn't go anywhere because of bathroom issues, and it was a drag. I had cancer 6 years ago with chemo and both external and internal (brachy) radiation ☢️, which is what has caused so much scar tissue. There was scar tissue growing inside my colon, and the surgeon had to cut out quite a lot. During the surgery, they ran into other scar tissue that was growing my organs together. I'm probably not finished having surgeries over this in the near future.
I will come back and post what I find out about what to expect after reversal surgery. It may or may not answer your specific questions but might let you know what to kind of expect.🤷🏻‍♀️

This has been a tough experience, but if I'm going to have to deal with the same problems as before, then I might have to reconsider the surgery. I haven't missed all of the stomach pains and messes that I had before! It's like… which was worse for me? At least with this bag, I can have some freedom.

Y'all take care!!😁

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Willhb3
Jul 13, 2025 4:38 pm

Thanks, Kelly, sounds like you have the exact same reservations we do. Her surgeon told us that she could expect lots of emergency runs to the bathroom initially, but that he felt she had a good chance of that happening less and less as time goes on. But he also said there was no guarantee and it would never be “normal.” I guess that is to be expected but hard to hear.
She has to have a loop ileostomy created first in August to allow the reconnection to heal. She will have the loop taken down after about 3 months, just in time for the holidays :(

I hope your visit goes well. Keep us updated.

TerryLT
Jul 13, 2025 8:09 pm

I would be very cautious about this decision. Perhaps get a second opinion. In general, the more colon you have, the better the chance of a successful reversal. With both colon and ileum shortened, it sounds like it could be a disaster. Another factor to consider is that her output will not just be frequent and very loose and watery, but also very caustic, which is really hard on the skin. Constant contact with the skin around the anus can cause severe skin breakdown, very raw and painful, with no chance to heal. If it were me, honestly, I would choose to stay with the status quo.

Terry

corlsharonl49
Jul 13, 2025 8:48 pm

I agree with Terry; careful consideration is needed. I've opted to stay with the ileostomy.

 

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CrappyColon
Jul 13, 2025 11:35 pm

Does your wife have any rectum left? That plays a large role in reversals.

Stillhere61
Jul 14, 2025 12:30 am
Very helpful

I have lost my sigmoid and about half of my descending colon. Can't comment on the small bowel part. I still have my full rectum. I am 2 years post-reversal, and all is good. But that is only my experience.

nosenuthin
Jul 14, 2025 6:53 am
Very helpful

I lost my entire sigmoid 5 years ago. I was re-hooked up from a loop ileostomy that I woke up with in the hospital. I originally went in for diverticulitis surgery robotic, but when they went in, I had already burst, so it ended up in a different surgery setting. The whole thing was the worst nightmare ever. My doctor kept saying I was constipated. I lost 40 pounds, could only eat chicken noodle soup, and finally, with such pain, I went to the ER many times. Oh my... but anyway, I was re-hooked up 2 months later after the initial surgery and joined the SCC short colon club. I do whatever I want to and have never gone in my pants. I do go at odd times, it seems. Lately, it's been late at night. Sometimes I do want to hurry to the bathroom, but I still have made it okay. The sigmoid is your holding chamber, but other parts take up the slack eventually, at least for me, I would say, because of no mishaps in 5 years. I don't know your case, but I hope for your quick recovery and keep a good outlook. Trust your doctor (but research them). We have all been through a lot; just keep going and going. You will make it.

Willhb3
Jul 14, 2025 11:47 am

She does. She lost about 5-6 feet. The section where the small meets the large. So she lost about 2.5 to 3 feet of each. Still has about a foot of colon left, as well as everything below that.
Thank you

CrappyColon
Jul 16, 2025 10:54 pm

Willhb3,

In my case, the entire abdominal colon is gone, and the end of the small intestine is connected to the rectum. Of the people I've talked to who are doing well after surgeries, the commonality is adequate length of the rectum. An average colon length is 5 ft. I have 8 inches (can of Coke size). In the early days, there was more frequency, and I'm mindful of what I eat before a travel day. We can adjust to far more than we could have imagined before these surgeries. If your wife would ever like to have a conversation, let me know 🙂

Willhb3
Jul 17, 2025 11:35 am

Thank you so much, she may. She is getting nervous as we get closer to surgery again.