This topic is about someone who has been living with an ileostomy for over 20 years and is now considering switching to a Barnett Continent Intestinal Reservoir (BCIR) due to some challenges they've been facing. They are looking for advice and insights from others who have experience with BCIR. Here are some key points and advice shared by others:
1. General BCIR Experience
- Many people who have switched to BCIR report a better quality of life compared to using an external pouch. They generally have no regrets, although some have experienced issues like pouchitis or dehydration-related kidney problems, which underscores the importance of staying well-hydrated.
- Typically, BCIR users need to empty the reservoir 3-5 times a day using a catheter, and accidents are rare unless there are surgical complications.
- The initial hospital stay for BCIR surgery is usually around 28 days, with significant pain expected but managed with morphine.
- Post-surgery, the abdomen may look "rough" temporarily, and there is a steep learning curve, but nursing support during the hospital stay helps with the transition.
2. Timing of Further Surgery
- Some individuals choose to wait several years after their original ileostomy before considering BCIR to avoid undergoing another major surgery too soon.
3. Dealing With Parastomal Hernias
- Several people have had multiple hernia repairs, with laparoscopic (minimally invasive) repair offering faster recovery and long-term success.
4. Enhancing Appliance Wear Time (if continuing with the ileostomy)
- Using Hypa-Fix tape to "picture-frame" around the flange can extend wear time and reduce leaks, even during strenuous activities like ice hockey.
- For those with adhesive allergies, Convatec Moldable Technology flanges with a built-in tape barrier can help reduce skin reactions.
- Adding a second seal by cutting Duoderm sheets into strips and framing the plastic coupling plate can provide 4-6 days of wear.
- Fewer changes can lessen skin trauma, but once a leak starts, removing the flange can be more challenging and may damage the skin.
5. Supplies, Costs & Insurance
- Duoderm sheets can be expensive, but some insurance or employer benefit plans may cover them fully.
- No specific hidden supply costs for BCIR were reported, but hospitalizations due to dehydration can occur if fluid intake is not sufficient.
6. Resources & Locations
- BCIR surgeries are performed at specialized centers, with one member having a positive experience in Florida.
- There are numerous informational websites available for those seeking detailed pre-operative education on BCIR.
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