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May 18, 2011

Need advice on having both ileostomy and urostomy - any experiences?

This topic is about Suzy, who is facing a tough decision regarding her health. She has recurrent bowel cancer and might be offered a radical pelvic surgery that would result in her having both an ileostomy and a urostomy. Suzy is seeking first-hand experiences to help her decide if this surgery is the right choice for her.

Here are some insights and advice from others who have been in similar situations:

1. Adjusting to life with two stomas can quickly become your "new normal." Many people with both an ileostomy and a urostomy, or a colostomy and a urostomy, have reported living well for years and even achieving cancer remission.

2. There is a learning curve, but many find the surgery "worth it" compared to living with uncontrolled disease. Several people mentioned they would choose the surgery again if needed.

3. Experimenting with different products can help prevent leaks:
- Switching to Hollister 2-piece systems helped one person solve chronic urostomy leaks, thanks to the firm seal provided by the locking ring.
- Convex wafers from brands like Hollister and Convatec can help push out a flush urostomy stoma and provide a tighter seal.
- Some find they don't need any extra products like special wipes or skin-seal films; a simple "press-and-seal" method works well.

4. Establishing a routine and timing is important:
- Typical wear time is about 3 days for a urostomy wafer/pouch, and until the tape edge lifts for a bowel wafer.
- Using closed-end bags for the colostomy/ileostomy can avoid the need for rinsing; just change and discard.
- Once practiced, a full change of both appliances takes roughly 15 minutes.

5. Showering tips include leaving the urostomy pouch on due to continuous urine flow, while the bowel pouch/wafer can be removed for a brief "bag-free" shower on change day.

6. It's helpful to carry an emergency "go-bag" with a complete set of supplies for each stoma, either in a shoulder bag or in the car.

7. For managing high-output ileostomies, taking Lomotil (diphenoxylate/atropine) before eating out can reduce trips to the toilet.

8. Psychological coping is crucial. Give yourself time, keep a sense of humor, breathe, and remember that many people manage two or even three stomas successfully.

9. Long-term experiences with dual stomas range from 3 to over 11 years, and many emphasize that quality of life can still be good after adjusting.
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