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Sep 09, 2011

Ileostomy Complications After 13 Years: Seeking Advice

This topic is about someone who has been living with an ileostomy for 13 years and is now facing a decision about whether to remove their rectal stump. Initially, the stump was left in place in case a reversal of the ileostomy became possible. However, recent tests have shown that the stump still has ulcerative colitis, making reversal no longer an option. The person is feeling anxious and confused because they have received mixed advice from medical professionals about whether the stump needs to be removed.

Here are some insights and advice shared by others:

1. The person is experiencing spontaneous discharge from the rectal stump, occasional severe pain in the anal area, and ongoing colitis activity in the stump. They plan to consult their doctor soon and are interested in hearing from others who have had similar surgeries.

2. Benefits of removing the rectal stump:
- For some, removing the stump has resolved issues like persistent urethral-rectal fistulas and eliminated the remaining disease.
- Once the diseased tissue is removed, the chance of recurrence in that specific area is gone, although ulcerative colitis or Crohn’s disease can still appear elsewhere.
- One person described the surgery as the best of many procedures they had undergone and has been problem-free for 40 years, aside from a later stoma revision.

3. Healing time expectations:
- Full healing after the removal of the stump and anus can take several months, so it's important to prepare for a prolonged recovery period.

4. It's not always mandatory to remove the stump:
- Some surgeons suggest keeping the stump if it remains trouble-free, as many people never develop issues and do not require further surgery.
- The decision should be based on active disease, pain, fistulas, or troublesome discharge rather than an automatic time limit.

5. Peer support:
- Members who are scheduled for the same operation plan to share their experiences, encouraging mutual follow-up and information sharing.
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