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May 18, 2023

Comparing J-Pouch vs. Permanent Ileostomy - Experiences and Quality

This topic is about someone who currently has an end ileostomy due to ulcerative colitis and is considering switching to a J-pouch. They are curious about whether they can return to the same quality of life with an ostomy if the J-pouch doesn't work out. Here are some key points and advice from their situation:

- The person is happy with their current ileostomy, experiencing thick output, only needing to empty it 2-4 times a day, no dehydration issues, and enjoying an unrestricted diet.
- They are considering a J-pouch to regain continence, eliminate the external pouch, and improve their body image, especially since they lead an active, fitness-oriented lifestyle.
- According to their surgical consultation, the J-pouch has a 90% success rate, but about 10% of those people might return to an ostomy within 10 years.
- Ulcerative colitis won't recur in the J-pouch, but other inflammatory issues might arise.
- The J-pouch is now created trans-anally, which means better visibility during surgery, fewer open conversions, and smaller incisions. Only the loop ileostomy closure requires recovery.

The main question they have is whether people who have gone from a J-pouch back to a permanent ileostomy find the second stoma's function and quality comparable to the original.

Additional considerations include:

1. Whether the second end ileostomy behaves the same as the first or is less manageable.
2. Concerns about managing the temporary loop ileostomy and learning to use the J-pouch.
3. Whether former J-pouch users would choose to try it again or regret not attempting it.
4. The hope is that "control without urgency" and a better body image will outweigh the risks, even if it means more frequent bowel movements.

Advice and insights from others include:

- Some suggest sticking with the well-functioning end ileostomy, as it already provides relief from UC pain and urgency.
- There are inflammation risks with a J-pouch, such as cuffitis and pouchitis, which can be chronic and require ongoing medication. One person experienced constant episodes for five years before reverting to an ostomy.
- If the J-pouch fails, it can be reversed back to an ostomy. One person reported their second stoma worked well, although the output was faster due to less small bowel length, and it had to be placed on the opposite side, leaving a "crater" at the original site.
- For more detailed discussions and questions, www.j-pouch.org is recommended as a resource.
- Calmoseptine ointment is mentioned as a helpful product for dealing with perianal or peristomal irritation.
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