Experience with Continent Ileostomy: BCIR or Koch Pouch?

I'm 10 months post-op/8 months home after emergency total colectomy & ileostomy from necrotic ischemic colitis stemming from fulminate (quick-onset) septic shock + multi-organ failure. Basically, I thought I was having a bad 2-day migraine and the onset of a stomach bug but was really septic with a dying colon. A month in ICU (nearly all in a coma), 2 weeks surgical floor, 2 weeks acute care rehab…intubated 3 weeks & trach'ed another 4. Needless to say, I'm still a mess.

But I'm a mess who finds comfort in looking ahead. Soooo… question for fellow permanent ileostomates for whom reversal is not possible. Anyone have experience with a continent ileostomy, specifically a BCIR (Barnett continent internal reservoir) or a Koch pouch? Like a reversal only instead of creating an intestinal pouch & connecting to the rectum, the internal pouch is connected to a tiny under-skin stoma that you then catheterize 5-6 times a day.

If you have (or had) one, please share your experience - how long after your stoma surgery, were/are you high flow, how is it? I'm itching to get the BCIR despite not yet being able to walk without a limp, or make it through the afternoon without falling asleep 💤. Or thinking about the hospital without PTSD flashbacks.

Thanks!

G-Day RL,

You have had a really bad time. I hope one of our members is able to answer all your questions and put your mind at ease.

Good luck, sending good vibes your way.

Regards, IGGIE

Hi, I am roughly 45 years post-Koch pouch surgery. I had one revision after one year, and I have tons of information to share with all comers on the subject. I can honestly say that I have had close to zero problems with mine from the first day forward. There are plenty of tricks to the trade, so to speak, so ask away or contact me privately. My story is a very positive one; not all are, from what I gather.

Some tricks I've learned along the way: 1. Every few weeks, eat a good-sized bowl of French onion soup with a nice greasy cheeseburger, 3 large root beers, and a few large glasses of water. This is a great cleanser, so to speak. Daily in the morning, try a frozen drink. I do orange juice or apple juice, a small amount of vanilla yogurt, a few baby carrots, some blueberries, a small amount of almond milk, and some tea, either green tea or Tazo chai. Mix it up with ice. In the morning, also try a banana, some Cheerios, and a couple of frozen strawberries.

Lunch and dinner are pretty much eat what you can and never overeat. If you start losing too much weight, ice cream helps. I don't know if you like swimming, but if you do, the ocean a few miles a week in the morning works wonders for the mind, body, and stoma.

I'm serious about that. The saltwater refreshes the skin around the stoma; it's better if you have a regular ileostomy, I think, but I haven't had one of those in a long time. The main advantage of swimming is that it works the stomach muscles and keeps things flowing, so to speak.

Another trick of the trade is to try standing when evacuating. Get a large glass container and aim carefully. This is a trick I picked up from my first stoma nurse back in the early 1980s. My surgeon was Dr. Gelernt. Dr. Gelernt passed on over 3 decades ago, but he was a master of the trade at Mount Sinai in NYC.

Some other tricks I've learned along the way: those patches with the stickiness around the sides can do a job on sensitive skin. Try wearing them only once in a blue moon, and instead, use good quality baby wipes on the stoma with a soft microfiber face cloth over the top to absorb wetness. And stick to the empty schedule, particularly the first 5 years; you'll have plenty of decades of 2 to 3 times per day as your pouch matures.

Wishing you all goodness, I'll send some of my angel guides your way.

Hi Resi - in the spring of 2024, I had to have my BCIR removed after nearly 35 years due to the formation of an abscess that wouldn't go away, eventually becoming septic, but not as bad as you. There are no longer any surgeons still in practice doing the BCIR - all have passed on or retired. I would strongly recommend only having it done by a surgeon who specializes in continent ostomies. It's such a specialized procedure, and you really want an expert. I'm available to discuss or answer any questions you might have.

Maryann

Hey, I have had a Koch pouch for more than 30 years. I actually had to have it twice because I had to move the stoma site due to peristomal hernias. I had a regular ileostomy for 30 years before that. A Koch pouch is a lot of work at the beginning, and depending on your age (and you have been through the mill health-wise) and health at the time of surgery, recovery can be long. It is the best thing I could have done. The Koch pouch has made a huge difference to me. It has its drawbacks, just like any ostomy. I have traveled all over the world with both types. I will be happy to answer any and all questions you have. I have been asking if anyone has a K pouch, but I think we are it! Feel free to reach out to me any time. I have a lot of experience.

Tips on Hernia Prevention with Collin | Hollister

I agree. The surgeons love the J pouch, but patients not so much. I love my K pouch.

Hi, I have a Kock pouch since 1979 after three years of a bag that I hated. Ulcerative colitis since age 7. Standard ileostomy at age 19. No mental or emotional support back then.

The K-pouch has been pretty trouble-free. In the beginning years, I got blockages from time to time. I would go to the emergency room and get an NG tube. Other than that, it's been the best thing that ever happened.

I drink prune juice every other day or so. And I wear a nursing pad over the stoma. Otherwise, no issues to share.

I'm so grateful to Dr. Irwin Gelernt (RIP), who did the surgery at Mt. Sinai Hospital in NYC.

G-Day DMP,

How often do you have to empty your KP?

Does the prune juice work well for you?

Keep well and enjoy life.

Regards, IGGIE