This topic is about considering an ileostomy reversal after having emergency surgery due to a suspected case of ulcerative colitis. The person involved had their entire colon removed, leaving them with a permanent ileostomy. They are now exploring the possibility of a reversal and are seeking advice and insights from others who have had similar experiences.
Here are some helpful points to consider:
1. Long-term outcomes and risk of recurrence:
- If ulcerative colitis is still active in the rectal stump, a reversal could lead to disease recurrence and frequent, urgent bowel movements.
- Removing the rectal stump eliminates this risk but also removes the possibility of future reconnection.
- If the initial diagnosis was incorrect and ulcerative colitis is not present, a straight ileorectal anastomosis might be successful.
2. Types of reconnection:
- A direct connection from the ileum to the rectal stump often results in frequent bathroom visits.
- Creating an internal pouch, like a J-pouch, offers more capacity but can sometimes fail, leak, or require revision.
3. Personal experiences:
- One person has lived with an ileostomy for 50 years without regrets after removing the stump at 19.
- Another attempted a reversal a year after surgery, which failed due to the small bowel not reaching, leading to more surgeries and emotional challenges but eventual acceptance.
- A third person still experiences inflammation and bleeding in the stump five months post-surgery and is seeking mental health support, believing reversal is unlikely.
4. Decision-making guidance:
- It's important to have thorough diagnostic tests to confirm if active ulcerative colitis remains.
- Consider the quality-of-life improvements against the risks of repeated surgeries, leaks, and persistent disease.
- If not in urgent need, allow time for surgical techniques to advance.
5. Managing current stoma issues:
- Low stoma placement and a parastomal hernia can cause pressure, leaks, and skin issues. Consulting a stoma nurse or surgeon about hernia belts, convex wafers, or re-siting the stoma might help.
6. Lifestyle and diet:
- An anti-inflammatory, organic, vegan diet helped one member's son stop UC medication after 20 years. Optimizing your diet may benefit bowel health, whether or not you pursue a reversal.
7. Mental health:
- Some members have experienced depression and suicidal thoughts related to failed surgeries or ongoing pouch problems. Professional counseling and peer support are highly recommended.
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