This topic is about life after an ileostomy reversal, which involves creating a J-pouch. It explores the emotional and physical journey of someone who has undergone this procedure after living with ulcerative colitis and an ileostomy for several years. Here are some insights and advice shared by the community:
- The person is about a month and a half past their ileostomy reversal. They had lived with ulcerative colitis and an ileostomy, which they affectionately named "Frank," for five years. While grateful that the stoma saved their life, they describe the experience as a personal struggle, dealing with constant worry, finding the right pouch system, adhesive itch, and skin damage.
- After the reversal, they have experienced less pain and urgency, but life still doesn't feel completely normal. They've developed pouchitis, which brings up feelings that the journey is never truly over.
- Emotionally, they are dealing with large abdominal scars, fatigue from years of illness, and frustration that doctors predicted an almost trouble-free life post-surgery, which hasn't been the case.
- They plan to donate leftover ostomy supplies and are considering a career in medical assistance, specifically in gastrointestinal care, to help future patients. They express admiration for the resilience and humor of those who have lived with an ostomy.
Advice and insights from the community include:
1. Living with a chronic illness means facing ongoing challenges, both physical and mental. It's important to find blessings in the journey and remember that you are always welcome in ostomy support spaces, even after a reversal.
2. Some people find that a permanent ostomy offers a pain-free, medication-free life. If dealing with pouchitis and frequent doctor visits becomes too exhausting, returning to an ostomy might restore quality of life.
3. Staying connected with fellow patients can provide empathy, honest conversations, and hope, whether or not you currently have a stoma.
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