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Oct 12, 2015

Seeking Advice - Ileostomy Reversal After 18 Years - Nervous but Excited!

This topic is about someone who has been living with an ileostomy for 18 years due to severe ulcerative colitis and is now considering a reversal surgery. The idea of feeling "normal" again is exciting, but there are concerns about the risks and potential complications. Here are some insights and advice shared by others:

1. It's important to seek multiple medical opinions and have detailed discussions about the risks involved. Consider the possibility of ulcerative colitis recurring in the rectal stump and ask about expected bowel movement frequency, dietary changes, time to regain control, potential short-bowel syndrome, and overall complication rates.

2. Some people have shared their experiences with straight reconnection or failed J-pouches. Reconnecting without a pouch can sometimes lead to continual leakage and reliance on diapers. Failed or inflamed J-pouches may occur within 5-10 years, often resulting in a permanent return to an ileostomy. Chronic pouchitis can cause severe pain, raw skin, fistulae, and additional surgeries.

3. Many feel that living with an ileostomy offers better control, less urgency, and more predictable emptying than reconnection. A proctologist mentioned that those with a bag generally have a higher quality of life, and odour control is easier with a pouch than with unpredictable leakage.

4. There are alternative surgical options, such as a continent ileostomy (Kock pouch) or its Barnett modification, which provide internal storage emptied 2-4 times daily. These options require careful food choices and occasional valve revision.

5. For managing odour with current pouching systems, ostomy deodorants like M9, Safe and Simple, Nascent, and Ostofresh are recommended. Some people create DIY natural solutions. Frequent pouch changes can help when filters clog, and support garments like the Stealth Belt make discreet emptying easier.

6. Practical tips include the saying "If it isn’t broken, don’t fix it," which was echoed by many. Accepting the bag as "normal" can boost confidence in dating and daily life, and a partner who rejects the ostomy is "not worth it." Plan for longer-than-expected hospital stays, as surgery recovery times can vary. A "point-and-shoot" emptying technique can avoid sitting on public toilets and add convenience when traveling.

7. Be cautious with medications, as prolonged use of narcotics like Vicodin for post-pouch pain can lead to dependence.
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