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Mar 31, 2017

J-Pouch or Ostomy - Seeking Advice on UC Treatment Options

This topic is about making a significant decision after being diagnosed with ulcerative colitis (UC). The person involved has been living with an end ileostomy since last December after having surgery to remove their colon. Now, they are considering two options: creating a J-pouch or keeping the ileostomy permanently. They are seeking advice from others who have faced similar choices.

Here are some insights and advice shared by others:

1. Take your time. Many people emphasize that there is no rush to make a decision. Keeping the rectal stump allows for future options.

2. Be aware that retaining the rectal stump does not guarantee UC won't recur elsewhere, but it can help monitor inflammation.

3. Consider quality of life experiences. Some people who initially had a successful J-pouch later needed a permanent ileostomy due to issues like pouch failure, chronic leakage, or urgency. Others have enjoyed long-term success with a J-pouch and appreciate the freedom of being bag-free, knowing they can return to an ostomy if needed.

4. Understand the surgical risks and potential for scarring. One person mentioned their surgeon estimated only a 40% chance of an uncomplicated reversal, with concerns about larger incisions if more surgery is needed.

5. Think about the severity of your UC. If your UC flares were frequent and debilitating, some people chose a permanent ileostomy to avoid the risk of relapse.

6. Consider technical advancements. Earlier pouches were sometimes hand-sewn, but newer surgical techniques, biologic drugs, and improved post-op care might lead to better outcomes today. It's important to discuss current data with your colorectal team.

7. Long-term ostomy perspective. Some people who have lived with an ostomy for decades report stable health and no regrets after removing the rectal stump.

8. Explore adjunct measures. One person manages residual rectal bleeding with a daily turmeric latte, though no specific brand was mentioned.
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