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40,826 members
Apr 17, 2025

Facing Another Ileostomy Surgery: Seeking Advice and Support

Topic Explanation

The discussion centers around a forum participant who is facing another ileostomy surgery due to their current ileostomy retracting again, nine months after a previous surgery. The participant has had multiple surgeries, including a colostomy that failed in 2023, a colostomy reversal, and an ileostomy formation in 2024, followed by a refashioning of the ileostomy. The consultant has suggested moving the ileostomy to a position just below the rib cage due to previous scars from the colostomy. The participant is seeking advice and support from others who may have experience with high stoma placements.

Advice and Insights

1. High Stoma Placement Experiences:
- Several participants have high stomas, with placements ranging from just below the rib cage to a few inches above the belly button. They report that high placements can be beneficial for wearing pants and avoiding interference with waistbands.
- High stoma placement can make it easier to wear support belts, as the rib cage helps stabilize the pressure from the belt.

2. Clothing and Accessories:
- High stoma placement may require adjustments in clothing choices, such as using camisoles or support belts, as regular underwear may not reach high enough.
- Some participants find it easier to wear pants with a high stoma, while others mention challenges with finding suitable dresses.

3. Support and Products:
- Using a 2-piece Hollister drainable pouch is recommended for those with high stomas, as it may work better than a one-piece system.
- Support belts, such as the 2-inch wide Nu-Comfort belt, can help keep the stoma appliance in place. Body adhesive products can also prevent belts from slipping.

4. Surgical Considerations and Second Opinions:
- Participants suggest considering a second opinion from another consultant to explore different surgical options.
- Some have had their stomas relocated multiple times and emphasize the importance of finding a reliable surgeon.

5. Managing Retraction and Complications:
- Using products like Eakin's Kayra Seals can help manage retraction and prevent blowouts.
- Staying hydrated may help reduce stoma retraction, especially before changing the appliance.

6. Personal Experiences and Encouragement:
- Participants share personal experiences of having multiple surgeries and the challenges of dealing with retraction and relocation.
- Encouragement is offered, with
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