Continent Options - BCIR, K-pouch, J-pouch Discussion

Opening a discussion for these options (I see several dozen members that have one of these).

My understanding:

BCIR: a modification of the K pouch which includes a more elegant valve design. K pouch not done much anymore, in favor of either the BCIR (if you don't have an intact anus - "Ken/Barbie butt"), or the J-pouch (if you do have an operational anus). (J-pouch not technically an ostomy.)

BCIR has very few surgeons (and locations, I think just two nationally) that do this, and my insurance company wouldn't pay for it 20 years ago when I looked into it. So that would be a downside. Also, the failure rate might be as high as 30% to 50% in terms of needing follow-up surgery, including converting back to a conventional ileostomy.

Frankly, my personal opinion is, "no colon, no reversal." I've heard mostly negative things about J-pouch and I am too old to gamble with another major surgery. I almost died during the colectomy and my wife is paranoid of me going through another major surgery, even though I am not sick and in reasonably good health for a "man of my age." And there are just too many drawbacks to ditching the bag and not having at least a sigmoid portion of the colon. Especially if you don't trust J-pouches. I don't and neither does my surgeon. Drawbacks are:

1. Always having to know where a toilet is.
2. The high probability of at least some incontinence.
3. Nighttime incontinence.
4. The constant feeling that you have to take a shit.
5. If you ever end up back in the hospital, or worse, a nursing home and cannot care for yourself, it is a lot easier for staff to deal with a bag full of shit, rather than pants or a bed full of shit. Been there. Done that.
6. Having to chance another major surgery, laparoscopic or not. I was septic during the first one and my blood pressure crashed. I developed pneumonia and then pancreatitis. The whole ordeal was 4 months. I am not concerned about the sepsis or blood pressure this time around. But, I am paranoid enough about the pneumonia. I have "moderate to severe" emphysema and I can't afford any more pneumonia.
7. As much as I dearly love the people that cared for me in the hospital, I have no desire to see them again. At least, not in their place of employment.

That's my 2 cents on the subject at hand. 🤓

Daniel

Hi Shawn, I looked into the BCIR before opting for my permanent ostomy. I went to speak to a surgeon in NJ who was trained to perform them, and he begged me not to consider it. He said he, at that point, was removing more of them than he was creating. The failure rate is high. I just imagined caring for one or, worse, being older and hospitalized with medical folks wondering what the heck kind of contraption I had. It was just too risky for me, so I went with the tried and true ostomy. This is simply my experience - I know there must be folks out there who are happy with their BCIRs.

I totally agree with what's been said here, and I am so glad I got rid of my J-Pouch. I love my stoma. Regards, IGGIE

Very good input from everyone.

Excellent point from Daniel: No colon, no reversal.

Pneumonia is an equal opportunity killer. Don't spend any more time in a hospital than you have to.

Living with Your Ostomy | Hollister

Hi Shawn,

BCIR... yes, an interesting development. I have spoken quite extensively with a patient who has direct experience of BCIR.

I have great respect for my current surgeon who has been very supportive when working with me to address the resultant complications I have experienced following my TIES implant and explant. The gentleman in question, here in the UK, has done a number of BCIR surgeries and as he has said, the suitability - or otherwise, is largely down to the histology of each patient - also of course, the 'living' collar around the valve improvement is an interesting advancement. However, BCIR is still relatively in its early days of development - [as compared to the 'Brooks' stoma creation] and at the end of the day, one needs to question whether a manual manipulation of inserting tubes to facilitate the venting of an internal pouching system is in fact an actual continent system. For it seems to me that any aspiration is just another methodology of manual emptying.

There are some very dedicated and 'feeling' surgeons who have both vocation and advancement techniques, and who are able to be forthcoming and forthright with their experience and knowledge and who are also honest as to the actuality of what the current knowledge body reflects. For we as lay patients are at the mercy sometimes of cutting-edge possibilities - so it is always good to try and understand the odds and actualities resulting over time.

By the way, just because I have made reference to TIES, please do not infer from my reply that I advocate the TIES 'system' - for I am not aware how this has progressed in reality as the device is only available under clinical trial and there is a shortage of direct feedback. Although one understands that a number of patients have been implanted in India - I know not for how long such patients have retained the device, the device design modifications [if any - apart from the improvement of the lids]... how surgical expertise has grown over time in preparing for and inserting this device... and so on.

Returning to the topic of your post Shawn, I do hope more patients who have been down the BCIR route are able to offer valuable direct patient feedback. Keep up the research and should you have private replies, I hope you will be able to post a summary of your research for the benefit of those who search on the continence issue when considering their options.

Thank you for raising the topic. We need to keep informed and help research and dedicated surgeons to move forward treatment options for those who follow us.

Best wishes,

Jayne

I have had a BCIR for over 30 years, and it's the best decision I ever made. After 12 years with an ileostomy and using bags, I was desperate for another option. My sister had heard about BCIR, so I went through the surgery. I've never regretted it once. There may be some who have had problems, but I'm not one of them. If your colon has been removed like mine, there simply isn't a better option. No bags, no wafers, no blowouts, no mess. It's incredible. I'm just sorry it's not available to everyone and almost no doctors do this surgery. It makes life so normal again.

See my racermaN44 new member opening comment. My take on BCIR is nothing but positive for the past 24 years since I had it performed. I have had 4 significant events in my life, and the BCIR is one of them. I would never go back. My ileostomy was always difficult to seal (poor appliance), but in the 1960s, there were few options. The sealer was poor, and the skin around the stoma was always so irritated it would seep blood and was forever painful. I had it for 40 years. My 24 years since BCIR surgery (2000-2001) has never been better, given I was 16 when my large colon, rectum, and anus were so ulcerated there was no option but the complete removal of all. Early on, one medication began to help, azulfidine (I think that was it, a sulfa drug), but I quickly became allergic to it, and there were no alternatives. Today, I have no memory of a normal daily toilet routine; guess I took it for granted like most young people. The one disadvantage I now notice is the lack of a BCIR Medical Center to contact. Every one that I have found has closed, including Olympia Medical Center in LA, that still has a website up last dated 2021. 2021 is when it was purchased by UCLA Medical. I read they have purchased a large number of LA region hospitals and changed them to concentrate on other medical issues. My take is my experience, that BCIR is the closest thing to normal in regards to all currently available remedies for severe bowel disorders that have resulted in the loss of the colon, rectum, and anus. I'd love to hear from someone who knows of a current medical center in N. America that performs BCIRs. The surgeon who last performed this type of surgery in 2021 at Olympia is Don J. Schiller, MD FACS. Also, I would love to hear from BCIR'ers what brand they use for a catheter.