What can you tell me about BCIR?

As I mentioned in my first post (this is only my second..!), I am thinking about opting for an ileostomy in the not-too-distant future, mainly due to problems with scar tissue in my colon (strictures) and also because I am concerned about getting colon cancer. Unfortunately, it was also discovered at my last doctor's visit that I am one of that small subset of people who has *both* (yes, you read correctly) Crohn's AND UC (can you believe it??). My Crohn's is sort of atypical--it has Always only affected my colon.

Anyway, as I was doing some research on the internet, I came across the procedure of BCIR (Barnett Continent Intestinal Reservoir), which, as I am sure many of you already know, is an ileostomy with the "bag" located on the inside of the gut, constructed from small intestine tissue. So all you have on the outside of you belly is a small slit--the stoma is retracted inside, and you do not have to wear any apparatus. It is drained using a small plastic tube 2-3 times per day, so **you can choose when to drain**, it is not a constant flow.

This sounded very interesting to me. However, everything I read about it says that "the procedure cannot be performed on patient with Crohn's disease," --it is "only performed on patients with UC"-- I thought this would immediately rule me out BUT, I found that since my Crohn's is considered atypical and is ONLY located in the colon, I could possibly get the surgery with the doctor's approval.

If anyone has a BCIR, is considering one, or know someone who has one, could you please post any information about it? (How old you are--if you don't mind :), if you have CD or UC, have you/the person you know had problems with your BCIR, etc.) Any and all information would be greatly appreciated. There is not much out there on the web on this topic.

Thanks very much, everyone! This board is really helping me in making this decision, and also in keeping a positive attitude about it all...!


~Considering

Crohn's since age 15 (now 26)
Surprisingly, no parts removed yet!
8 surgeries to dialate scar tissue
Other than that, I am pretty healthy! :)

Hmmm...

As I am doing more research on the internet about the BCIR procedure, I find it strange that there are only a handful of hospitals that offer this procedure, and none of them are well-known (at least, not to me). The websites that talk about this procedure seem more like advertisements than informational...and seem to be "high-pressure" sales--for example, on the websites you can leave your name and email or phone number, and "a nurse will call you within 24 hours" to talk about surgery with you. That sounds like my real estate agent!!

Something just seems...not right. Sigh, I guess it sounded too good to be true...

You can read about it at http://www.bcirostomy.com/

The big drawback with the BCIR (Barnett's Continent Internal Reservoir) is that if anything goes wrong with it, usually local surgeons will refuse to touch it - you will need to go back to the hospital where you had the op done which, if not in your local vicinity, can be a pain (literally). The BCIR is a patented operation which is why it's only done in certain hospitals. A lot of people are against the BCIR simply because of their advertising tactics of which you're obviously aware (they even have seminars which you can attend if interested).

It's an updated version of the Kock's Pouch which I've heard a lot more about and is more widely done (and really, from what I heard from people who've had it done, the BCIR isn't any better than it anyway).

Another drawback (of both the BCIR and the Kock's Pouch) is that you need to carry a small catheter with you wherever you go to catheterise your stoma.... and wash the catheter out in the sink in public loos (I'm not sure I'd be comfortable with that, however others don't mind doing it).

The major selling point of the op is that you don't need to wear a bag.

Like any op, you'll get it's supporters and you'll find those against it.

Good luck with your research.

I tend to read that people with CD tend to have external ostomies since CD can relocate anywhere in the GI tract. This is why with CD you dont hear much as far as the J pouch unless the person was thought to have UC prior to Sx

Thanks everyone for the information...!

suebear--thanks for the site about the Kock pouch. Cleveland Clinic is a place that I would feel comfortable with having surgery at, with its wonderful reputation. Also, since I live in Pittsburgh, it is nice and close! :)

Shaz and summerstorm--thanks for the run down of the pros and cons. You both seem to know a lot about the procedure! I am definitely thinking the BCIR is too new/dangerous for me.

And dragonfly, you are right about the j-pouch and Crohn's. I was incorrect to say that my Crohn's is just in my colon--it is also in my rectum and anus (up until a few weeks ago, I thought those were 2 names for the same part! but apparently not...!). I tend to lump all the lower parts together and call them "colon", which is not correct. Anyway, so I cannot get a j-pouch because I do have a bit of scar tissue in the anus/rectum areas. What surprises my docs is that my small intestine is and has always been pristine (odd for Crohn's).

Anyway, thanks all. I think this board is great...!

Hello Everyone

I have had crohn's disease for 16 yrs now. In august 2001 I got a resection surgery done and I ended up with a permanent ileostomy. I have regreted getting it done since day one. I thought that by having it done i will not need another surgery or i won't be in so much pain anymore...not so. since then i have had another bowel resection, and 2 parastomial surgerys done. The latest resection i had done, crohn's returned the following check up about 2 months later i was sick again...needless to say..i am depressed..and have been diagnosed with that too because I am so unhappy with wearing this bag on my side.  There have been problems associated with that too. So since August I've begged my surgeon to give me other options rather than having to wear this bag..he said there are NO other options..I came across the BCIR procedure and my spirits lifted..I know that it is not normally done for crohn's disease patients..but i am hoping to hear some success stories with people who have crohn's disease and had the BCIR procedure done...As far as i know there are no surgeons in my province that do BCIR's, so i live in Canada..anyone know a good surgeon i can contact to evaluate my situation...I would love to hear from anyone who knows what i am talking about...thank you ..................posted  June 2008

Attitude is everything, Life is what you make of it, etc. Your description of the "add-on bag" is just what I needed to read tonight. You are exactly right about the internal body being most important. I am so thankful that my colon- which could have turned cancerous if I had left it inside me- is gone.

Actually, the BCIR has been performed and perfected since 1979, when Dr. Barnett decided to modify the Kock pouch to reduce valve slippage/incontinence. The surgeon in St Pete Florida, Dr Rehnke, has been performing it since 1994, which isn't too long but I think I would still feel pretty comfortable with it. I've decided that if/when I get the j-pouch, if it doesn't work out for me for some reason I'll go to the BCIR after.

http://www.bcirostomy.com/studies.html

There's some interesting numbers there