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May 19, 2014

Struggling with Ileostomy and Seeking J-Pouch Surgery Options

This topic is about someone who is looking for a surgeon to create a second j-pouch after having a permanent ileostomy. They lost their first j-pouch due to a failed connection and are unhappy with their current situation. They are reaching out to see if anyone knows of a surgeon who might be willing to help.

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

1. Some people caution that j-pouches can often fail after several years, with one person describing them as "at best a temporary solution."

2. It is recommended to focus on learning to manage life with an ileostomy, as many people live normal, active lives with one.

3. One person shared their personal experience:
- They had a j-pouch for about 15 years before needing to switch to an ileostomy due to blockage and narrowing.
- They experienced persistent discharge, which turned out to be a large abscess, leading to the removal of the j-pouch.
- They found that having an ileostomy was ultimately "the best thing I've ever done," with only minor mishaps in care.

4. It is acknowledged that finding a surgeon willing to perform another operation can be challenging. Surgeons may not fully understand the day-to-day life with j-pouch complications or an ileostomy.

5. Both respondents offer encouragement and wish the person luck in either finding a willing surgeon or adapting to life with an ileostomy.
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