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Where Everybody Understands You
41,403 members
Jun 19, 2025

Looking for friends who can relate to living with an Ileostomy.

This topic is about someone living with an ileostomy on Long Island, New York, who is seeking a companion who understands the challenges of having a high-output ostomy. They have found it difficult to connect with a local support group and are hoping to find someone nearby or at least someone who can relate to their experiences and offer mutual support.

Here are some helpful insights and advice shared by others:

1. Online communities can sometimes be more supportive than local groups. Many people are willing to share their experiences and offer private correspondence.

2. A person with 70 years of experience living with an ileostomy is available to provide one-on-one guidance.

3. For those dealing with short-gut syndrome, it's important to manage hydration, magnesium, and overall nutrition carefully.

4. To prevent night-time blow-outs and leaks:
- Coloplast high-output bags have been effective for some users, and samples can be requested through a Coloplast Advisor.
- Hollister high-output bags are reliable, especially when used with recessed stomas.

5. For skin protection and barrier options:
- Ceramide-infused barrier rings, used with Hollister pouches, can help prevent skin damage around the stoma.
- Ostoform barrier rings with an integrated "spout" direct liquid output away from the skin and resist breakdown. Free samples are available at Ostoform.com.

6. Combining high-output pouches with the above barrier products is recommended for managing the watery output typical of ileostomies.

7. Some people keep spare supplies at work and choose how open they want to be about their ostomy. Others find that being candid about it reduces stress.

8. Private messaging on the site requires a paid membership, but alternatives include continuing conversations publicly or sharing contact information externally.

9. Members from Long Island, Iowa, and other areas have offered to correspond as day-to-day support partners.
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