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Aug 15, 2025

Ileostomy Reversal

This topic is about someone sharing their positive experience after having an ileostomy reversal. They reflect on their journey and seek ongoing support from a community of people who have had similar experiences. Here are some key points and advice from their story:

- The person had a successful ileostomy reversal on July 28, after living with a colostomy for 15 months and then a temporary ileostomy for 12 weeks. Their recovery has been smooth, with the abdominal wound healing well, and they were able to return to work on light duty within a week. They felt confident in their surgeon, describing this third surgery as much easier than previous ones.

- They are grateful for the advice they received from the forum and are wondering if they can still be part of the group now that they no longer have an ostomy appliance.

- They wish to remain active in the forum and appreciate encouragement to stay involved. They are currently experiencing phantom pains where the stoma was and slight numbness around the healing wound.

- They have a history of severe skin sensitivity, which made dealing with leaks at work emotionally distressing. Their medical history includes a sudden unexplained colon perforation, but no diverticulitis.

- At 58 years old, they note that if they were older and without skin problems, they might have chosen to keep the ostomy. They are now undergoing evaluation to donate a kidney once fully recovered.

Advice and insights shared include:

1. Stay engaged in the community, as members without a current stoma can still offer valuable experiences, especially regarding reversals and postoperative challenges.

2. For those preparing for a reversal:
- Be aware that a temporary ileostomy might be created through the existing colostomy site, with internal healing typically taking about 12 weeks.
- Protect peristomal skin aggressively and plan for products or techniques if previous colostomy caused skin issues.

3. Reversal outcomes can vary widely:
- Some people achieve near-normal function, while others may experience high-frequency stools, clustering, incontinence, pouchitis, small-bowel obstructions, or chronic pain even years later.
- Some individuals may need or choose to return to a permanent ostomy after poor reversal results.

4. Decision-making guidance:
- Reversal is major surgery and involves risks; it's important to thoroughly investigate the risks versus benefits.
- Factors that may lower the success odds include advanced age, pre-existing bowel disease, prior pelvic radiation, or extensive resection.
- Surgeons should discuss all potential outcomes, including clustering, gas, social limitations, and intimacy issues. Patients should seek both positive and negative firsthand accounts.
- Getting a second opinion and having confidence in the surgeon’s skill and honesty are crucial.

5. Symptom-management tips for those dealing with high-output or clustering after reversal include using loperamide (Imodium) and the "marshmallow trick" to slow transit.

6. Some people find that living with a well-managed permanent ostomy offers stability and freedom, which can be preferable to dealing with unpredictable bowel function after a reversal.
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