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Jul 14, 2024

Living with a Loop Ileostomy - Seeking Advice and Personal Experiences

This topic revolves around a 32-year-old individual dealing with a loop ileostomy and the challenges that come with it, such as body image issues and the impact on intimate life. The person is also facing several medical concerns:

- Active perianal Crohn’s disease.
- Persistent discharge from the rectal stump, producing 0.5–1 liter of whitish-yellow fluid daily.
- High stoma output, requiring the bag to be emptied 7–10 times a day.

Doctors have suggested making the stoma permanent and relocating it to the left side to improve absorption. However, the individual is determined to pursue a reversal and is seeking advice from others who have been in similar situations.

Additional considerations include:

- The stoma output can sometimes reach 2–3 liters in 24 hours.
- The individual is curious about the Kock (K-) pouch, its capacity, and whether surgeons in the EU perform this procedure.
- They would consider a K-pouch only if a reversal is not successful, as it is less visible and easier to conceal.

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

1. Continent options:
- Some suggest exploring the Kock pouch (K-pouch, continent ileostomy) as it removes the need for an external bag. It's important to check if EU surgeons are experienced with this and if it can handle a 2–3 liter daily output.
- Consider pairing this with Ken-Butt surgery, which involves the removal or closure of the rectal stump to stop chronic discharge.

2. Reasons for recommending permanence:
- Active perianal Crohn’s, a fragile rectum, or extensive bowel damage might make reversal impossible or short-lived, potentially leading to a worse quality of life with constant urgency and accidents.
- Many patients eventually find a reliable ostomy preferable to uncontrolled bowels.

3. Research and second opinions:
- Investigate all surgical options and their availability in your country thoroughly.
- Be aware that Crohn’s medications, like biologics and immunosuppressants, can help but may lose effectiveness over time, affecting the long-term success of a reversal.

4. Medication examples from others:
- Some have used infliximab infusions every 4 weeks and budesonide foam to reduce rectal inflammation before surgeons consider reconnection.

5. Peer experiences:
- One person with a loop ileostomy for perianal disease has healed rectally and is awaiting a surgical review for a possible reversal.
- Another individual still has a stenosed, fragile rectum, and their reversal is on hold pending response to infliximab and budesonide foam.

Members emphasize the importance of balancing psychological needs with medical realities, seeking multiple opinions, and being prepared for the possibility that a permanent or continent ostomy might ultimately offer the best quality of life.
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