Question: What should I know about J-pouch excision and conversion to a permanent ileostomy?

Answer: The forum discussions provide several insights and advice for individuals considering J-pouch excision and conversion to a permanent ileostomy:

- Stoma Creation and Positioning: It is recommended to have the stoma placed away from belt or pants lines and to ensure it protrudes at least 1 inch to help with appliance sealing and prevent skin irritation. An enterostomal nurse should mark the optimal site pre-operatively and be available for post-operative care.

- Surgical Details: Clarify with the surgeon whether the operation will be open, laparoscopic, or robotic, and discuss the extent of diseased intestine removal. Understanding the follow-up schedule and trusting the surgeon is crucial.

- Managing Crohn’s Disease: Discuss long-term control options with a gastroenterologist, including biologics or newer medications, to prevent further small-bowel disease.

- Hospital Stay and Recovery: Typical hospital stays for this procedure range from one week to 10 days. Recovery experiences vary, with some individuals reporting faster output and better energy post-surgery.

- Practical Preparation: Bring entertainment to the hospital, have a support person for appointments and initial recovery, and maintain good rapport with nursing staff.

- Emotional Support: Nervousness is normal, but the surgery may offer relief from frequent doctor visits and medications. Community support is available, and sharing progress can help others.

- Pain and Recovery: Expect significant pain initially, with a strict pain-medication schedule recommended. Mobility may be slow, and full ease in sitting can take several months.

- Scar Tissue Considerations: Extensive prior surgeries can create adhesions that may complicate pouch removal. Pre-operative imaging and surgical strategy discussions are advised.

- Outcomes and Alternatives: Some members report that removal of the J-pouch solved or prevented serious complications. Non-surgical management options, such as output-thickening gels, may be considered if removal is risky.

Overall, thorough discussion with healthcare providers about risks, benefits, and management options is essential for making informed decisions about J-pouch excision.

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