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Nov 03, 2012

Complications and Frustrations - Abscess before Reversal Surgery

This topic is about the challenges and frustrations someone is experiencing before undergoing ileostomy reversal surgery, which involves connecting a J-pouch. The person is dealing with several issues, including clothing difficulties, an abscess, and side effects from antibiotics. Here’s a breakdown of their experience and some advice from others who have been through similar situations:

- The person switched from high-waisted or maternity clothing to regular low-rise jeans, which caused problems. The waistband pressed on the stoma pouch, making it hard to fasten the pants and irritating a healing incision. This led to an abscess, which they drained at home. Although doctors praised the drainage, the skin turned black-green, and emergency treatment confirmed superficial necrosis.

- Currently, they are recovering but experiencing severe fatigue, sleeping up to 14 hours a day. They also suffer from nausea, vomiting, a bad taste, and headaches due to antibiotics.

- They feel discouraged after only 2½ months with an ileostomy, worrying about leaks, skin irritation, noises, clothing stains, and feeling self-conscious.

- There is relief from being off certain medications like hydromorphone and prednisone, but anxiety remains about finances, school, and relying on parents at age 20.

- They question why clinicians said regular jeans would be fine and feel misled, wishing for more realistic clothing advice.

- Despite fears, they plan to proceed with reversal surgery for mental well-being and to end feelings of self-consciousness, as it is essential for controlling ulcerative colitis, which did not respond to medication.

Advice and insights from others include:

1. Abscesses around abdominal incisions are common, and many empathize with the frustration.

2. Regular low-rise jeans often don't work well with an ileostomy. Alternatives include:
- Continuing with maternity or high-waisted styles.
- Trying overalls or boiler suits, which keep pressure off the pouch and are comfortable for daily wear.

3. Emotional support is important:
- Feeling safer in the hospital, where staff handle leaks, laundry, and pain control, is normal. The transition home can be challenging.
- Partners can help with middle-of-the-night sheet changes to reduce embarrassment.

4. Regarding the decision about reversal:
- Some suggest considering keeping the ostomy if symptoms are better controlled and lifelong medication after reversal seems daunting.
- Others affirm that choosing reversal for personal comfort and self-image is equally valid, highlighting strength and adaptability whichever path is chosen.
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