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Jun 30, 2010

Deciding on Colectomy: A Personal Journey and Advice

This topic is about the experiences and encouragement shared by someone who underwent a colectomy and now lives with a permanent ileostomy. The person describes their journey through a challenging health situation, including a severe ulcerative colitis flare that led to multiple hospitalizations and eventually surgery. Despite the difficulties, they now feel healthy and want to offer support and advice to others who might be facing similar decisions.

Here are some helpful insights and advice shared by the community:

1. Quality-of-life improvement after surgery:
- Many people who delayed surgery for conditions like colorectal cancer or severe Crohn’s colitis found significant relief once their diseased colon was removed. They no longer had to deal with daily pain, urgency, or the side effects of medications like prednisone. The benefits of living without these issues often outweigh the permanence of having a stoma.

2. Don’t wait until a crisis to decide:
- Some individuals waited until they were very weak or had developed serious complications like megacolon before agreeing to surgery. Opting for surgery earlier could have prevented these additional health issues.

3. Self-image and partner support are important:
- Having a supportive spouse or partner who accepts the ostomy is crucial. Being comfortable with your own reflection and managing the ostomy appliance without distress are signs that you’ve overcome the toughest emotional challenges.

4. Temporary options with future reconstruction:
- One option is a colectomy that spares the rectum, creating a temporary ileostomy with plans for an internal J-pouch later. The reported failure rate for this pouch is less than 1%, and any pouchitis that occurs is usually manageable with antibiotics.

5. Exploring alternatives and preparations:
- Some people tried probiotics, biofeedback, or experimental procedures like J-pouch or artificial rectum construction before deciding on a permanent ostomy. Knowing that you’ve explored all options can make the decision easier.

6. Role models and resources:
- Rolf Bernirschke, a former San Diego Chargers kicker, is mentioned as an inspiring example of someone who achieved athletic success with an ileostomy.
- The website C3 Life is recommended for peer stories, answers, and practical help.

The medications and terms mentioned include Prednisone, 6-MP, Asacol, Coumadin, and ileostomy/colostomy pouches.
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