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Jul 12, 2022

Facing Ileostomy and Urostomy: Seeking Advice and Support

This topic is about a woman who is facing the possibility of living with both an ileostomy and a urostomy after undergoing multiple surgeries for cancer. She has already been through a lot, including rectal-cancer surgery, chemotherapy, radiation, lung resection, and the removal of a vaginal tumor. Now, with cancer returning, her doctors suggest removing her entire vagina and bladder, which would result in her having a urostomy in addition to her existing ileostomy. She is understandably feeling overwhelmed and is seeking reassurance from others who have experience living with two stoma bags.

Here are some pieces of advice and insights shared by others:

1. Double-ostomy experience:
- People who have both an ileostomy and a urostomy mention that managing two stomas is quite similar to managing one. The routine is comparable, and any leaks can be managed with techniques they have already learned.
- One person shared that although she still has her bladder, it is unused and causes spasms. She is considering Botox injections to manage these spasms and would only consider full bladder removal if absolutely necessary.

2. Leak management:
- The initial months can involve some trial and error, but with time and the right supplies, the frequency of leaks tends to decrease. As you gain more experience, your confidence will grow.

3. Perspective and encouragement:
- Some find it helpful to think of the surgery as removing organs that have "betrayed" them, which can make it easier to accept the changes.
- Many people express admiration for the strength she has already shown through her previous surgeries. They believe that if she can manage one stoma, she can certainly manage two.
- There are also expressions of support, hugs, and encouragement, with many people reassuring her that she can handle this challenge.
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