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Apr 17, 2025

Facing Another Ileostomy Surgery: Seeking Advice and Support

This topic is about someone who has been through several abdominal surgeries and is now considering a high-placement ileostomy due to repeated retractions. They are curious about others' experiences with a stoma placed high on the abdomen and are seeking advice on how to manage this new situation.

Here are some insights and advice shared by others who have been in similar situations:

1. Many people have high stomas, ranging from a couple of inches above the navel to just under the breast, and they report adapting quickly. Some benefits include:
- Waistbands, belts, and seatbelts no longer rubbing against the appliance.
- Easier to wear trousers, though some find dresses a bit more challenging.
- A flatter abdominal surface can improve wafer adhesion and is less affected by weight changes.

2. Practical tips for managing a high stoma placement:
- Consider wearing a support garment or belt. Recommendations include:
- Nu-Hope “Nu-Comfort” 2-inch-wide support belt and Nu-Hope rub-on body adhesive to prevent belt slippage.
- Comfizz support vest, which flattens the pouch while allowing flow.
- Standard ostomy belts or camis that reach the rib cage, as regular underwear is usually too low.
- Be prepared for the wafer to lift slightly when sitting; most people manage this without leaks.
- Emptying the pouch while out can be awkward initially, but practice helps.

3. Appliance choices that work well for high placement:
- A 2-piece Hollister drainable pouch is preferred by some, as a one-piece might crinkle too much.
- Consider convex wafers if the stoma retracts again.

4. Accessory seals for retraction control and leak prevention:
- Eakin’s “Kayra” seals, often referred to as Eakin seals, are recommended.
- Staying hydrated before changes may help reduce temporary retraction.

5. Surgical and placement considerations:
- Some surgeons may relocate to or remove the navel, with varying results.
- Scar-dense areas can still be used, and lasers or alternative techniques might reduce scar-tissue issues.
- It might be wise to seek a second surgical opinion before committing to another move.

6. Encouragement and perspective:
- Several people have undergone multiple moves or revisions, with some having up to eight surgeries, and eventually found a stable solution.
- "Fourth time lucky" is possible, and members emphasize patience, self-kindness, and staying active while healing.
See full discusison
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