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Jan 17, 2011

Awaiting Surgery: Stuck in Limbo with Ulcerative Colitis

This topic is about someone who is waiting to see if they can have their ileostomy reversed after having surgery for ulcerative colitis. They are living well with their ostomy but are considering the possibility of going back to life without it. Here are some thoughts and advice shared by others in similar situations:

- The person is waiting for an appointment with their surgeon to have bowel tissue sampled. This will confirm if they had ulcerative colitis and help decide if they can have the ileostomy reversed.

- They feel conflicted because while a reversal could mean a tough recovery and the risk of disrupting a system that currently works well, the idea of not having to manage a pouch and enjoying simpler showers is appealing.

- They are okay with the worst-case scenario of going back to using the bag since they are already managing well with it. They see the situation as a win-win because their disease is gone, their quality of life has improved, and they will be grateful no matter the outcome.

Advice and insights from others include:

1. Confirm Pathology Results: It's important to know if the biopsies of the removed colon were analyzed. Confirming it was ulcerative colitis and not Crohn’s disease is crucial because Crohn’s often rules out the possibility of reversal.

2. Shared Experiences:
- One person was initially misdiagnosed with Crohn’s but learned after surgery it was ulcerative colitis. They are now pursuing reversal and will share their outcome.
- Others waiting for similar tests, including fistula repair, mention that the waiting period is challenging but temporary.

3. Encouragement and Mind-set:
- Stay optimistic; you have already overcome the hardest part.
- If you don’t try for a reversal, you’ll never know if life without the bag could work for you. You can always return to using the bag if necessary.
- Remember that life is short; take opportunities that could enhance your quality of life.
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