Ileostomy Reversal Recovery - Seeking Experiences and Advice

Almost 5 months since my ileostomy reversal. Having good days (where I have freedom to "do stuff" and be active) and bad days (where I'm stuck in the bathroom or back and forth to the bathroom for hours). My surgeon's office seems to think this is not unusual, but I would love to hear from others who have gone through this procedure. Will I ever be able to travel comfortably? Are days where I spend so much time going to the bathroom going to be part of my life forever? I guess I'm looking for improvement beyond what I'm experiencing now and I don't know if I'm being unrealistic. I hear people say it takes months or even years to reach a "new normal." But what does that mean?

Hi knitter,

Thanks for sharing your experience. Many folks on this website are considering reversal. Some, like me, decided to keep the ostomy. It's a tough decision. Unlike other surgeries that "repair or fix," ostomy reversal can result in varied outcomes.

Try keeping a food diary. Chart what you eat, then the result. At 6 months post-op, you're still healing and your digestive system is still adapting. It takes time.

My issues are exacerbated due to lack of a gall bladder. Cholestyramine light helped a lot, since it helps my liver produce bile acid to dissolve fats. I still have some bad days after 10+ years, but the most prevalent issue is the need to go immediately after eating. Believe me, I am no one to go out with to a restaurant! Foods I must avoid include wheat, white potatoes, processed sugar, onions, and soft oily foods like salmon. I replace these with low glycemic-index foods -- whole grains and sourdough, sweet potatoes, honey and real maple syrup, and onions cooked a long time (as in a slow cooker). I had to experiment and had a lot of accidents. Everyone's system is different, though.

Hi Knitter, I'm sorry to hear that you are experiencing bad days that are so hard and getting in the way of the things that you would really like to be doing. Everyone is different, of course, but at 2 months out, I have reached a good balance. I think I've been lucky overall that my system has tended to the slow side rather than diarrhea and urgency. That's had its own problems with trouble getting things out sometimes, sometimes with a great deal of pain and discomfort, but with taking fiber every day and Miralax a couple of times a week, things have been settling down. I find that I typically have to poop 2 or 3 times in the morning and maybe once or twice later in the day, but without much urgency and a fair amount of control. At this point, I don't really feel restricted in what I can do, though I did early on. In my experience, finding the right fiber balance seems to be the key to evening things out for a more regular experience each day. Hoping that you will see many more good days and fewer bad as your body continues to adjust. I don't have much of a rectum left, but I understand that over time the attached colon stretches to create more storage and therefore a more normal experience. I feel like that has been happening for me and I hope it continues. Hope this is helpful in any way—happy to continue the conversation.

Rich

Thanks for your response. It sounds like everyone has different experiences with the reversals, and I would never want anyone to think I'm not grateful for having had the chance to get one. I have read posts that claim it took a short time to adjust and posts that claim it took years to find the so-called "new normal." A bit of background: I had my rectum removed but my sphincter is still intact. How much that helps with storage, I have never been able to figure out. At any rate, I also was told that the colon takes time to stretch and create more storage, but so far, though I try to hold it (the surgeon suggested that might facilitate the stretching), I do feel pretty much housebound in the late afternoon to evenings. I'm trying to work on both my exercise and nutritional habits. Do you know any resources for learning more about retraining the colon? Resources for promoting gut health after months of not using the large intestine? I had an ileostomy in May of '23 and then the reversal in September '23. I have had very little luck finding experts who know a lot about these procedures and deal with surgery aftercare. My surgeon's office doesn't want me to talk to other people on their patient roster, which I do understand. But how do you find people who can advise you on what helps recovery? I'm thinking about calling institutions in Australia and the UK at this point—they seem to have quite a presence on the internet when it comes to both ileostomy and colostomy knowledge.

Thanks again. Hope you are continuing to thrive!

Words of Encouragement from Ostomy Advocates I Hollister

Thanks for responding, Knitter. I agree that there is very little follow-up and support for navigating the journey after reversal from the surgical or oncology teams. I've written to the team when things were bad and they had suggestions, but it does feel very much like trial and error going forward. The Facebook group called Reversal Roundabout has been the best source of information and perspective for me. You can post any question there and will get a lot of responses pretty quickly. I also just read lots of posts going back in time to learn from others. So I would suggest that.

No question that this stuff is hard and hopefully continues to get better. To me, getting the fiber piece and regulating the right speed of your system with either Miralax or Imodium seems to be the key.

Rich