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Nov 12, 2011

Considering Reversal - Am I Crazy?

This topic is about someone who has been living with Crohn’s disease for many years and is considering a second ileostomy reversal after 18½ years. Here's a bit of background and some advice and insights shared by others:

- The person was first diagnosed with Crohn’s in 1979 and had a temporary ileostomy in 1983 due to a bowel perforation. This was successfully reversed in 1984.
- They enjoyed nine symptom-free years until another perforation in 1993 led to multiple failed surgeries, resulting in a permanent ileostomy.
- Now at 50, symptom-free and financially stable, they are contemplating reconnecting their bowel. Their surgeon considers this a reasonable request and plans to conduct various tests to determine if a reversal is possible.
- They are aware that the reversal might not work and could lead to another ileostomy but are considering the potential benefit of living without a bag for a few years.

Additional thoughts and advice from others include:

1. Make a list of pros and cons. After thorough testing, choose the option that seems best overall.
2. Wanting another reversal is not crazy; many people with ostomies would consider it if their bodies allowed.
3. If the reversal fails, returning to an ileostomy is always an option, which can be reassuring.
4. Some people have mixed feelings about their ostomy bags due to issues like sleep disruption and body image, which are valid reasons to explore other options.
5. An alternative option is the BCIR (Barnett Continent Intestinal Reservoir), which involves an internal pouch and catheterization instead of an external bag. Opinions vary:
- Pro: No external appliance.
- Con: Requires catheter use, and some find it less ideal than expected. Long-term data for Crohn’s patients is limited.
6. Maintaining a positive mindset is important. Accepting any outcome is a common sentiment among those considering or planning reversals.
7. Take advantage of your skilled surgeon now, as their expertise is crucial and they may retire.
8. It's normal to feel stressed and overthink things. Sharing concerns and humor can help keep things in perspective during the testing process.
See full discusison
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