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Jan 20, 2011

J Pouch vs. Permanent Ileostomy: Seeking Advice

Choosing between a J-Pouch and a permanent ileostomy is a significant decision for someone who has undergone an emergency colectomy due to ulcerative colitis. The choice involves weighing the benefits and challenges of each option. Here are some insights and advice to consider:

1. Suitability and Disease Type
- Generally, people with ulcerative colitis are good candidates for a J-pouch, while those with Crohn’s disease are not.
- There is a small chance of developing pouchitis with a J-pouch, even for those with ulcerative colitis.

2. Quality-of-Life Trade-offs
- With a J-pouch, expect 4 to 12 bowel movements per day initially, with possible night leakage, though this often improves over time.
- A J-pouch can offer more freedom in terms of body image and lifestyle, but it requires staying close to restrooms and careful dietary management, especially in the first couple of years.
- A permanent ileostomy provides predictability, fewer dietary restrictions, and allows for uninterrupted work, with many considering it to have fewer internal risks compared to pouch surgery.

3. Surgical and Technical Considerations
- It’s important to choose a colorectal surgeon with extensive experience in performing J-pouch surgeries, as their expertise can significantly impact the outcome.
- Discuss the potential placement of a new stoma if the J-pouch fails, as it might be positioned higher and be less convenient.
- Additional surgery involves more anesthesia, a hospital stay of about a week, and the possibility of adhesions. Taking time to live with the current setup for a year can help in making a more informed decision.

4. Personal Experiences
- Some individuals have successfully used a J-pouch for many years, managing initial challenges like pouchitis and dietary limitations, while enjoying a good quality of life.
- Others have chosen to keep their stoma to avoid uncertainty, maintain their work schedules, or reduce the need for future surgeries.

5. Research and Support
- Reading personal stories from others who have undergone reversals can provide valuable insights. A forum thread titled “REVERSAL STORIES PLEASE POST GOOD AND BAD” is recommended.
- It’s beneficial to consult with multiple health professionals and talk to people who have experienced reversals.
- Another option to explore is the Barnett Continent Ileostomy (BCIR), with more information available on its website.

6. Mind-set
- Success with either option partly depends on your attitude and willingness to adapt after surgery.
- Consider the decision as reversible; if the J-pouch doesn’t work out, returning to an ileostomy is possible.
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