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Sep 25, 2018

Advice Needed on J Pouch Experience for My Son

This topic is about a mother seeking advice for her 21-year-old son who is considering J-pouch reconstruction after having an ileostomy. She wants to understand the pros and cons, as well as any alternatives, to help her son make an informed decision. Here are some insights and advice shared by others:

1. Explore all surgical options:
- Consider the BCIR (Barnett Continent Intestinal Reservoir) as an alternative to the J-pouch, especially if Crohn’s disease is not a concern or has been inactive for at least a year.
- Note that only a few surgeons perform the BCIR. For more information, you can request a DVD from Palms of Pasadena Hospital in Florida.

2. J-pouch experiences:
- Many young, lean patients find the J-pouch works well for them.
- Some individuals have reported returning to normal life, including university and social activities, with about 4-6 bowel movements per day.
- Benefits include feeling healthier and happier, not needing an external appliance, and making manageable diet adjustments.

3. Early post-operative issues:
- The first 5-7 days may involve severe nausea or vomiting due to ileus, abdominal drains, and high stool frequency (8-15 times a day).
- Night-time leakage of gas or small amounts of stool is common initially and can be managed with a pad or tissues.

4. Potential long-term or secondary complications:
- There is a risk of rapid dehydration during stomach illnesses, similar to having a traditional ileostomy.
- Iron-deficiency anemia may develop, so it's important to monitor lab results.
- Surgical wound issues, such as needing to reopen and pack an abdominal incision, might require ongoing nursing care but typically don't limit activities.

5. Daily management tips:
- Eating smaller, more frequent meals can help reduce output and gas; try to avoid long periods without food.
- Taking anti-diarrheal medication, like Gastro-stop or Imodium, before bed or long classes can help control bowel movement frequency.
- Staying hydrated is crucial, especially after any illness.

6. Questions to ask the surgeon:
- Consider asking, "If you were in my position, would you choose the J-pouch?" This can lead to a deeper discussion about success rates, lifestyle impacts, and alternatives.

7. Mindset and support:
- Maintaining a positive attitude and advocating for oneself are important for any surgical decision.
- Many people live fulfilling lives for 30-50 years or more with an ostomy or continent pouch.
See full discusison
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