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Jul 10, 2015

Seeking Support for Making My Ileostomy Permanent

This topic is about a young woman who, after undergoing emergency surgery, is now considering making her temporary ileostomy permanent. She is navigating a mix of emotions and concerns as she prepares for this life-changing decision. Here are some of the challenges she faces and the advice she has received:

- She feels isolated because no one in her close circle has an ostomy, making her feel alone in her experience.
- Her illness and surgeries have delayed her life goals, such as marriage and having children, while her peers seem to be moving forward.
- A stoma nurse mentioned that her flat stomach aids in appliance adhesion, causing her to worry about future changes like pregnancy, weight gain, or aging.
- She opted for an ostomy over a J-pouch to reduce infertility risks but still fears for her future fertility.
- Persistent itching and skin irritation at the wafer edges cause anxiety about long-term skin issues.

Additional insights from her later posts include:

- She uses barrier wipes and sprays, changes her appliance every 2-3 days, and has tried various wafers without finding an allergy. Anti-itch creams provide temporary relief.
- She feels her life is on hold during her healing period and is envious of her friends' milestones, though she remains grateful for her health.
- The nearest support group is too far, and she cannot attend the UOAA conference this year.
- Her current system includes a Coloplast convex wafer and Hollister Adapt barrier rings, which have resolved leaks.
- Calamine lotion has successfully stopped the itching without causing burning, and her skin looks better.
- If pregnancy is not possible, she and her boyfriend are open to adoption.

Advice and insights from others include:

1. Long-term success stories: Many have lived happily with ileostomies for decades, raising families and managing body changes without regret.
2. Pregnancy and body-shape changes: Women have reported normal pregnancies and pouch wear, with good outcomes even with body changes.
3. Skin-care solutions: Calamine lotion, Cortizone cream, and the "crusting" method can help with edge irritation. Allowing the skin to air out during changes is beneficial.
4. Product adjustments: Trying different wafers and barrier products can help find the right fit. Free trials are available from suppliers.
5. Change-frequency tips: While 2-3 day changes are common, adjusting frequency based on itchiness or product performance can improve comfort.
6. Support resources: Online communities and resources like the American Ostomy Club and UOAA offer valuable support and information.
7. Emotional and lifestyle encouragement: Focusing on health and humor, considering adoption, and taking life one step at a time can help manage emotional challenges.
8. Technical notes: Skipping the J-pouch can preserve more intestine and avoid complications, especially for Crohn’s patients.
See full discusison
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