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Jul 14, 2024

Living with a Loop Ileostomy - Seeking Advice and Personal Experiences

Topic Explanation:

The discussion centers around living with a loop ileostomy, focusing on body image concerns, high stoma output, and the desire for stoma reversal. The original poster is dealing with active perianal disease and a significant amount of liquid discharge from the rectal stump, requiring frequent stoma emptying. Despite medical advice for a permanent stoma and relocation for better absorption, the poster is determined to pursue reversal to improve personal life and relationships.

Advice and Insights:

1. Alternative Options:
- Consider exploring a Kock pouch (K-pouch) as an alternative to a traditional external pouch. It may be less apparent and easier to camouflage, though its feasibility depends on medical advice and availability in the EU.

2. Medical Considerations:
- Doctors may advise a permanent ostomy due to the potential for reversal to be unsuccessful or temporary, given the condition and affected body parts.
- Reversal might lead to frequent bathroom visits, accidents, or other issues that could be more challenging than managing an ostomy bag.

3. Research and Decision-Making:
- Conduct thorough research to understand what options are available and suitable for your specific situation, especially considering the availability of procedures like the K-pouch in the EU.
- Consider the implications of perianal Crohn's disease on reversal success, as medications can help but are not a cure and may lose effectiveness over time.

4. Personal Experiences:
- Some individuals with similar conditions have not experienced healing in the perianal area, even with intestines in remission. Treatment plans may include medications like infliximab and budesonide foam to improve conditions before considering restoration.
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