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Jun 30, 2025

Living with a Urostomy and Colostomy: Seeking Support and Tips

This topic is about someone who is currently living with a urostomy and an ileostomy. They were hoping for a reversal of the ileostomy, but due to radiation damage, this is no longer possible. Instead, they are now scheduled for a permanent colostomy. This unexpected change has been very difficult, leading to feelings of devastation and dark thoughts. They are seeking advice on how to manage life with both a urostomy and a colostomy, both practically and emotionally.

Here are some helpful insights and advice:

1. General outlook
- Remember that the ostomies have saved your life, allowing you to enjoy the life you have.
- Many people live well with both a colostomy and a urostomy.
- Accepting what cannot be changed often brings more peace than resisting it.
- You have already adapted to having two stomas; transitioning from an ileostomy to a colostomy should be manageable.

2. Colostomy vs. Ileostomy
- Some find a colostomy easier to manage than an ileostomy because the output is more formed, appliance changes are cleaner, and nutrient absorption is better.
- You can expect fewer urgent bathroom trips compared to an ileostomy.

3. Practical tips
- Consult your surgeon or ostomy nurse about colostomy irrigation; some people who irrigate successfully use only a stoma cap instead of a pouch.
- Keep an open dialogue with medical staff and ostomy nurses about the products and routines that work best for you.

4. Emotional coping
- Allow yourself time to adjust; feeling anger or grief over the lost reversal option is normal.
- Talk openly with family, friends, or online support groups to prevent dark thoughts from taking over.
- Consider reading "The Subtle Art of Not Giving A F*ck" by Mark Manson for strategies on dealing with adversity.
- Encouragement from peers includes reminders like "You’ve come this far; you can keep going," "Hugs," and that acceptance brings freedom.

5. Perspective
- Cancer and its treatments can feel like a relentless thief, but focusing on what remains within your control—such as your attitude, daily routines, and seeking support—can help restore a sense of agency.
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