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Oct 01, 2013

Deciding on Permanent Ileostomy - Am I Crazy???

This topic is about someone who has decided to keep a permanent ileostomy instead of opting for a reversal surgery. This decision has surprised some doctors, making the person feel like their choice might be unusual. However, after weighing the pros and cons, they are confident in their decision.

Here are some key reasons and insights shared by the person and others in the community:

1. The person wants to avoid further surgeries and the potential complications like pouchitis or infections. They are also concerned about the risk of losing more small-bowel length if a reversal fails.

2. They believe the small intestine is naturally meant to keep food moving, and they worry that a J-pouch would make it function in a way it’s not designed to.

3. They have adapted well to their stoma and appliance, affectionately named "Stella," and appreciate the regained continence and freedom it provides.

4. Family stability is important to them, and they don’t want their wife and young daughter to experience another medical crisis.

5. Having recently quit smoking, they are now focused on health and reducing long-term cancer risks.

6. They have practical concerns about adhesive security while swimming.

The community offers the following advice and insights:

- Many people choose to keep a permanent ileostomy, and it’s important to trust your own body and experience since you are the one living with the outcome.

- Quality-of-life improvements are often noted, such as a quick return to health, energy, and freedom from pain, as well as the ability to engage in various activities without worrying about bathroom emergencies.

- Keeping a permanent ileostomy can reduce the risk of colorectal or rectal cancer and avoid issues like pouchitis, fissures, and frequent medical procedures.

- Reversal surgery can be challenging, with a potentially long and difficult recovery period. Success rates vary, and some people experience complications that require further surgery.

- Some people have positive experiences with reversal, but the initial recovery can be tough.

- Practical tips for living with an ileostomy include personalizing the pouch for confidence, using a portable bidet for easier cleaning, and managing activities like swimming with regular adhesive checks and waterproof covers.

- Alternative options like the J-pouch or K-pouch exist but may come with higher maintenance and complication risks.

- Emotional support from the community is valuable, as doctors may not always fully understand how much better life can be with a stoma compared to before surgery.
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