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Feb 01, 2010

Seeking Stories from Stoma Patients Unrelated to Common Conditions

This topic is about people who have received a stoma for reasons other than common bowel diseases like ulcerative colitis, Crohn’s disease, IBS, or cancer. The person who started the discussion had an abdominal-aortic aneurysm surgery, which led to complications and eventually resulted in a stoma. Initially, they felt angry about the situation, but support from others has helped them cope. They are now looking to connect with others who have had similar experiences due to surgical complications or other unrelated medical conditions.

Here are some helpful insights and advice shared by others:

1. For those looking for the ideal stoma appliance, consider a combination of products: a Hollister New Image flexible base for good adhesion and flexibility, a Coloplast One Click contoured coupling to prevent caking and allow the pouch to swivel, and a Hollister drainable bag that is easy to clean.

2. Managing life with a J-pouch, especially if it was created after colon removal without prior inflammatory bowel disease:
- Use Lomotil (6–8 tablets per day) to control output.
- Regularly perform Kegel exercises to strengthen the anal sphincter and help prevent accidents.
- Follow a very restrictive diet, mainly consisting of protein, with only small amounts of V-8 juice or apples.
- Eating little or nothing during the day can help reduce frequency and cramping.
- Having an intact rectum can significantly improve J-pouch function; without one, the outcomes might not be as favorable.
- The first seven months can be particularly challenging, and some might prefer to keep an ileostomy.

3. Be aware of issues with recalled Bard hernia mesh, which can break, wrap around intestines, and create massive fistulas. This might require both a colostomy and an ileostomy. Resulting hernias can reduce wafer wear-time to just one day, and legal action for compensation might be an option.

4. Post-operative stomas that were intended to be temporary, such as those after repairing a small bowel hole or a twisted/“mega” colon, can become long-term if hernias or unresolved bowel issues develop. Community blogs can offer further real-life experiences and support.
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