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Apr 22, 2024

Reconnecting After Almost 30 Years

This topic is about a person who has been living with an ileostomy for nearly 30 years due to Crohn’s disease. Now, at 57, they are facing a decision because of a painful parastomal hernia that requires surgery. Their surgeon has suggested two options: repairing the hernia with mesh, which carries a high risk of recurrence, or performing an ileorectal anastomosis (IRA) using the remaining 10 inches of colon and rectum. The person is seeking advice and experiences from others who have undergone a similar reversal after many years with a stoma.

Here are some insights and advice shared by others:

1. General Outlook
- Many people understand the desire to avoid "what ifs" and note that if the IRA doesn't work out, returning to an ostomy is possible, though each surgery can shorten bowel length and requires recovery.
- There are success stories, such as a 20-year post-ileostomy IRA that went well and a 10-year reversal with good results.

2. Get Comprehensive Surgical Information
- It's important to get precise measurements of the remaining rectum and colon, as their function can vary greatly.
- Ask about the amount of small bowel left and whether the terminal ileum and ileocecal valve were removed, as this affects bile-salt and fluid absorption.
- Discuss the likelihood of Crohn’s recurrence at the anastomosis and the potential for scar-tissue strictures.
- Understand the failure rates of hernia repairs; mesh repair alone may not be durable.
- Seek at least a second and preferably a third opinion from colorectal and gastroenterology specialists before making a decision.

3. Functional Considerations
- After 30 years, the motility of the residual colon is uncertain, so researching "idle colon" outcomes is advised.
- Testing the pelvic floor and anal sphincter can help determine if the muscles can handle frequent or watery stools post-IRA.
- With only about 10 inches of colon, expect limited water reabsorption, leading to urgency and loose output, which can be harder to manage than formed stool. Planning for bathroom access is important.

4. Healing & Quality of Life
- At 57, healing is still favorable, but recovery can be lengthy, and open surgery is likely.
- Improving body image is a valid goal but should be balanced against possible functional downsides.
- Chronic joint pain, kidney stones, and other Crohn’s-related conditions should be considered in overall wellness and postoperative rehabilitation.

5. Emotional & Practical Support
- Many community members offer prayers and encouragement.
- The forum emphasizes that individual outcomes vary, and gathering real-life experiences and honest input from surgeons can help set realistic expectations.
See full discusison
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