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May 09, 2022

New Ostomate Seeking Support

This topic is about a new ostomate named Beth who is reaching out for support and advice as she navigates life with her ileostomy. She is looking for insights from others who have been through similar experiences, especially regarding future surgeries and practical tips for daily life.

Here are some helpful insights and advice shared by the community:

1. Mental adjustment to a permanent ileostomy:
- Be prepared for an emotional journey. Accepting your stoma, and even giving it a name, can be comforting.
- Many find relief knowing that the surgery can end flare-ups from conditions like ulcerative colitis, bringing long-term peace of mind.

2. Recovery tips for "Barbie-butt" surgery (proctectomy):
- Ensure the perineal wound is fully closed by the surgeon and take care of it to prevent reopening.
- When sitting, try to avoid putting weight directly on the scar by leaning to one side.
- Consider using an inflatable air-cushion for comfort at the dining table or desk.
- You might experience "phantom poo" sensations when urinating, which are harmless.
- Over time, sitting becomes easier, and returning to physical work is possible.

3. Practical stoma management:
- Wearing a good support belt early on can help prevent leaks and provide abdominal support during activities.
- Naming your stoma and keeping a sense of humor, perhaps with themed tattoos, can help with emotional coping.

4. Loop ileostomy and rectal mucus:
- Some people with a loop ileostomy still pass mucus rectally, while others have it diverted entirely into the pouch. This varies depending on the surgical technique used.

5. General encouragement:
- The forum is a great place to find answers based on real experiences. No question is too small, and even those with decades of experience continue to learn new things.
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