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Nov 15, 2011

Double Ostomy - Seeking Support for Rare Cancer Survivor with Multiple Pouches

Living with a double ostomy, which includes both a colostomy and a urostomy, can be quite challenging. This situation often arises after significant surgeries, such as those following a rare cancer diagnosis, where both the bladder and part of the colon are removed. Managing two stomas means dealing with two pouches, and for some, additional issues like persistent rectal discharge can add to the discomfort. Here are some insights and advice from others who have similar experiences:

1. Colostomy Irrigation: Some people find that irrigating their colostomy once a day helps control bowel movements and reduces the need for pads. It's a good idea to discuss this option with a colorectal or ostomy nurse to see if it's suitable for you.

2. Finding Support: You're not alone. Many others manage two pouches and are willing to share their experiences and offer support. Connecting with others can be incredibly helpful.

3. Professional and Peer Resources:
- Consult your medical team, including your surgeon and WOC/ET nurse, for personalized advice on managing leakage.
- Look for a local ostomy support group through online searches or organizations like the United Ostomy Associations of America. These groups can provide product samples, troubleshooting tips, and emotional support.

4. Night Drainage Options:
- Some people prefer using a rigid drainage bottle for their urostomy at night because it's easier to clean.
- Others use an overnight drainage bag. The choice often depends on personal comfort and cleaning preferences.

5. Managing Supplies:
- In the U.S., companies like Liberator can help manage billing with Medicare and insurance for ostomy supplies.
- In the U.K., supplies and overnight drainage bags are available for free through the National Health Service (NHS).

6. Day-to-Day Coping:
- With two appliances, you might find that wear times are shorter. Some people change their ileal-conduit pouch daily and their colostomy pouch twice daily.
- Setting small, achievable daily goals can help combat fatigue and feelings of isolation. Doing just a little more each day can boost your morale.

Living with a double ostomy is a unique journey, but with the right support and resources, it can be managed effectively.
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