The topic at hand is about deciding whether to undergo an ileostomy reversal. This is a significant decision, as it involves reconnecting the intestines, which can lead to various side effects. The person considering this procedure has been informed by surgeons that they might experience up to eight uncontrollable, watery stools a day after the reconnection. They are seeking advice and real-life experiences to help make an informed decision.
Here are some insights and advice shared by others who have faced similar decisions:
1. Frequency and urgency after reconnection:
- People without a colon often find themselves frequently needing to use the bathroom, sometimes experiencing accidents and requiring continence products.
- For someone using a wheelchair, the combination of urgency and limited mobility can be particularly challenging.
2. Perianal skin problems:
- The output from the ileum can be very acidic, leading to severe skin irritation and breakdown, often referred to as "butt burn." This has led some to avoid or revert from a j-pouch.
3. J-pouch or reversal outcomes:
- Long-term users have reported issues such as pouchitis, incomplete emptying, and fistulas, with some eventually returning to an ileostomy.
- Many describe their current ileostomy as preferable to the complications of a reversal.
4. Decision-making checklist:
- It is important to discuss the situation with a gastroenterologist and at least one other surgeon.
- Key factors to clarify include the remaining length of the small bowel, the status of the ileocecal valve, rectal function, any need for further bowel resection if reconnected, and how well the current diet and hydration manage output.
- Compare your situation only with patients who have similar anatomy, as outcomes can vary greatly.
5. Lifestyle considerations:
- Managing an ostomy pouch while using a wheelchair might be easier than dealing with unpredictable bowel movements.
- The quality-of-life improvements from having an ostomy, such as not constantly searching for a bathroom, often outweigh its inconveniences.
6. General sentiment:
- Most people advise keeping the ileostomy, considering it the "lesser of two evils.
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