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Jun 12, 2018

Ileostomy Misery - Self-Consciousness & Practical Struggles

This topic is about dealing with the challenges of having a full-length ileostomy pouch, especially when you're petite, dealing with noisy output, and feeling self-conscious. The person sharing their experience is 4'8" tall and has had an ileostomy since 2016. While their stoma, affectionately named "Ruby," is functioning well without skin issues, they face several practical and emotional challenges.

- Standard 11-inch pouches are too long and hang down onto the thigh.
- Rolling the pouch up and tucking it into underwear can cause discomfort as the Velcro or plastic clips dig into the groin.
- A shorter pouch isn't an option due to high output volume.
- The stoma is loud, which adds to feelings of self-consciousness.
- The person feels like a "misfit" and wonders if others experience similar struggles.

Additional details include that the stoma is positioned about 2-3 inches below the navel, making alternative positions tricky. They plan to contact ConvaTec for product guidance.

Here are some pieces of advice and insights that might help:

1. Contact manufacturers for tailored solutions.
- ConvaTec’s ostomy nurses or product specialists can suggest different pouch lengths, closures, or accessories. You can reach them at 1-800-422-8811.

2. Modify pouch position and support.
- Try wearing the pouch at a 30-degree angle instead of straight down to make it appear shorter.
- A soft, stretchy maternity band can help hold the pouch snug against the abdomen without it dropping below the waistline.

3. Manage output volume through diet.
- Keep a food log to note how different foods affect the consistency and volume of the output.
- Reducing high-fiber foods and certain seafood might help lower output, making a shorter bag feasible.
- Chew food thoroughly; for some, certain fruits like regular oranges can increase output, while others like watery oranges or apples produce less.

4. Address emotional adjustment.
- Understand that adapting to these changes can take a long time, and mindset shifts often require years.
- Support resources, such as the peer community at meetanostomate.org, can help ease feelings of isolation.
- Professional counseling, especially grief therapy, can assist in processing the loss of "the old body" and developing coping strategies.
- Helping others in similar situations can provide a sense of purpose and improve self-esteem.
See full discusison
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