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Mar 28, 2024

Preparing for Ileostomy Reversal - Concerns About Proctitis and Long-Term Outcomes

Topic Explanation
The forum discussion centers around an individual preparing for an ileostomy reversal, scheduled for May or June. The person is concerned about the potential development of proctitis due to diversion, which could lead to further surgeries such as proctectomy. They have a small portion of the colon left, about the size of a Coca-Cola can, and are seeking advice and experiences from others who have undergone similar procedures. The individual had a severe case of C. diff but no prior inflammation like cancer. They are looking for insights on the long-term outcomes and the possibility of avoiding further surgeries.

Advice and Insights

- Amount of Colon and Rectum Left:
- Clarify the exact amount of colon and rectum left, as it impacts the surgical outcome. One user mentioned having 8 inches of rectum left, which is crucial for the ileorectal anastomosis (IRA).

- Proctitis Concerns:
- Proctitis can be a significant issue if present before the surgery. One user shared that their surgeon proceeded with the plan despite proctitis, hoping it would calm down post-surgery. However, if proctitis cannot be controlled, an end ileostomy might be necessary.
- Another user mentioned that if proctitis is present now, it will likely persist after the reconnection, and controlling it with medication might not be effective long-term.

- Absorption of Water:
- There is a belief that the small intestine might take on the role of absorbing more water after the surgery, but no concrete studies were cited to support this.

- Surgical Outcomes and Alternatives:
- If the reconnection does not work out due to complications like proctitis, an end ileostomy might be the alternative.
- One user shared their experience of having a permanent ileostomy after multiple failed attempts to control proctitis and the development of Crohn's disease in the remaining colon stump.

- Support and Encouragement:
- Several users offered good luck and support, emphasizing the importance of being aware of all possible outcomes and scenarios.

- Personal Experiences:
- Users shared their personal experiences with similar surgeries, highlighting the variability in outcomes and the importance of thorough research and discussions with medical professionals.
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