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Dec 27, 2007

Anyone Else with a Barnett Continent Ileostomy?

Living with a Barnett Continent Ileostomy (BCIR) or a Kock Pouch involves a unique approach to managing an ileostomy. These procedures are designed to create an internal reservoir from the small bowel, allowing for a continent ileostomy. Here are some insights and advice from people who have experience with these procedures:

- Similar procedures and basic working principle:
- Both BCIR and Kock Pouch involve creating an internal reservoir from small-bowel strips. A catheter is used to drain the pouch through a small abdominal stoma, eliminating the need for an external bag. This is typically done several times a day, with schedules ranging from every 4 to 14 hours.

- Eating and diet after healing:
- After a healing period of 3 to 12 months, most people can return to an unrestricted diet. However, it's important to be cautious with certain foods like poorly-chewed items, mushrooms, pineapple, corn, nuts, and hard-to-break-down grains, as they can clog the catheter. If the output is thick, flushing with water can help.
- Gas-producing foods or large meals in the evening might disturb sleep, so it's often better to consume "gassy" foods earlier in the day. Once healed, many find they can enjoy carbonated drinks and ice cream, but it's important to listen to your body.

- Quality-of-life comments:
- Many people, even decades post-operation, describe the BCIR or Kock Pouch as the best decision they ever made. It allows them to engage in sports, yoga, cycling, sex, and work without the need to explain an external appliance. The psychological benefit of not having a visible pouch is also highlighted.

- Complications and failure rates:
- Positive experiences suggest a low long-term failure rate when the procedure is performed on well-screened candidates, with few or no revisions needed over the years.
- However, some report a high complication rate, including leaks, valve slippage, pouchitis, and short-bowel risk. Choosing the right surgeon and maintaining strict dietary vigilance are crucial.
- Following post-op instructions for 6 to 12 months is essential, and revision surgery is possible if the valve leaks.

- Troubleshooting and long-term maintenance:
- Issues like a leaking valve or gas escape can occur after many years. It's recommended to consult an experienced continent-pouch surgeon for possible valve repair.
- Always carry a spare catheter, and if you forget it, you can obtain one at any hospital or medical-supply store.

- Comparison with conventional (incontinent) ileostomy:
- Those using an external bag discuss managing high output with Imodium Syrup, "little-and-often" eating, and using different pouch sizes (mini, midi, maxi) along with night-drainage sets.
- Some in the UK have difficulty finding surgeons who perform BCIR/Kock or T-pouch procedures and express interest in locating specialists.

- Miscellaneous tips and facts:
- The catheter size used is 30 French.
- Imodium Syrup is mentioned for managing high-output stomas.
- Ostomy bags come in various sizes, and there are add-on night-drainage systems available.
- BCIR surgeries are performed in places like Pasadena Palms Hospital, Florida, with careful candidate selection.
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