Deciding whether to keep an ileostomy or undergo a reversal is a significant decision, especially after living with it for more than five years. The person facing this choice is eager to hear from others who have been through similar experiences, whether they have had a successful reversal or returned to having a stoma. They are even willing to travel across the UK to gather real-life insights.

Here are some pieces of advice and insights shared by others:

1. The underlying health condition and anatomy play a crucial role in the outcome.
- Results can differ based on conditions like ulcerative colitis, Crohn’s disease, ischemic colitis, rectal cancer, or colonic dysmotility.
- The success of a reversal also depends on how much of the colon or rectum remains and whether the rectum is healthy or inflamed.
- Surgeons might be able to connect you with former patients who have faced similar decisions.

2. Experiences after a reversal to a J-pouch can vary.
- Some individuals with ulcerative colitis or post-cancer surgery have had a J-pouch created. Many experienced frequent bowel movements, pouchitis, or symptoms similar to ulcerative colitis and eventually chose a permanent ileostomy or colostomy, which they now prefer.
- One person dealt with J-pouch issues for 18 years before switching to an end-ileostomy with a Kock pouch and is now content.

3. Trying a reversal might still be worthwhile for some.
- Someone with colon nerve failure, treated at the Cleveland Clinic, opted for an ileorectal anastomosis reversal. Despite early complications like post-operative ileus and a suspected GI virus, they are glad they tried, noting that a stoma can always be re-created if needed.

4. Consider quality of life versus surgical risk.
- Many emphasize weighing current life satisfaction with an ileostomy against the surgical risks and the lower statistical success of ileostomy reversal compared to colostomy reversal.
- It’s important to ask detailed questions about success rates, potential complications, and what “success” means in terms of frequency, urgency, continence, diet, and the risk of pouchitis.

5. Practical steps to consider.
- Prepare a list of questions and discuss all options, such as a J-pouch, ileorectal anastomosis, permanent end stoma, Kock pouch, or colostomy, with your colorectal surgeon.
- Look through the forum’s previous threads and “Premium Content” for detailed discussions on reversals.
- Consider getting a second opinion, especially from high-volume centers or specialists in motility.