What can you tell me about BCIR?

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ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 9/9/2007 6:25 AM (GMT -7)   
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 sad 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! :)

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 9/9/2007 11:13 AM (GMT -7)   
That BCIR sounds pretty interesting. It's amazing what doctor's can do. My son (20) also has Crohn's. His Crohn's is in the transverse and descending colon.



Terri
 
_________________________________________________________________________________
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son (HLA B27 positive) diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.

Post Edited (Irish_Mom) : 6/21/2008 6:42:43 PM (GMT-6)


ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 9/9/2007 11:48 AM (GMT -7)   
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... :-)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/9/2007 3:30 PM (GMT -7)   
well i looked at that surgery too, and in theory it's great! i asked my surgeon about it and he said to me, the idea is great but it's not been worked out yet. There have only been like 300 (maybe 500) performed in the US, and there are only a few hospitals, like you said, that do it, one of them jsut happened to be the hopstial my surgeron did part of his training at and worked at for a while, so he knew a good bit about them. A big problem with them is that they get infected really really easily. I was really excited when i first heard about it too, then when i found out so few people had had it, i thought no way am i gonna be the 301 person to have this major surgery!
there is a board for people with that surgery, i can't remember how i got there, but there aren't many people on it, obviously, the ones that are on there were pretty happy with it though. But there were probably only about 5 or 6 people on it.
i didn't see the advertisment parts though, that is funny

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 9/10/2007 2:36 AM (GMT -7)   
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 have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5695
   Posted 9/10/2007 2:45 PM (GMT -7)   
You can meet people with the kock pouch over on the www.j-pouch.org board. The BCIR is only practiced in 2 hosptials in the US the last time I checked (about 6 years ago). The best hospital to have the Kock done is the Cleveland Clinic in Ohio. You might also be eligible for a j-pouch. There are many people with Crohn's who have a j and are living very well.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 9/10/2007 3:22 PM (GMT -7)   
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
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


taurus
Regular Member


Date Joined Jul 2007
Total Posts : 65
   Posted 9/10/2007 4:29 PM (GMT -7)   
I was interested in the BCIR too. Until I found out from my gastro doctor that you could be in the hospital anywhere from 3 to 5 weeks. I changed my mind pretty quick.

ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 9/11/2007 3:01 AM (GMT -7)   
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...!

:-) :-)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/11/2007 7:05 PM (GMT -7)   
are you absolutely sure you have chrons? apparetnly there can be alot of misdiagnois on the two

scrappy123
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/21/2008 12:48 PM (GMT -7)   

 

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


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/21/2008 4:51 PM (GMT -7)   

If I were you I would continue to do searches of BCIR on the web and I would also contact the Cleveland Clininc and the other hospitals that do the procedure to give them your story.  From what little I know about it, it sounds that they are trying to find the "right" candidates in a series of different situations as the trial candidates.  That means that you may fit into the criteria of one of these areas.  By now they may even have a surgeon or two in Canada that is trained in this procedure.  Even if not it would be nothing I am sure to have you come to the states to have it done.

I can understand your frustration with the bag on your side and hope that through perseverance that you can make your situation work for you.  I will warn though, watch what you wish for.  It sounds like with this procedure there may be a whole host of new side effects that go along with it so make sure you can handle what it could possibly dish out.

If this is truly what you think will work for your situation then don't give up.  Your surgeon saying there is no other options means that there is no reason to talk to him any more, find a new surgeon who does have options.  If it is determined that you wouldn't be a good candidate for BCIR then look for other possible options, like the Koch's pouch if they still do it.

Good luck and keep us posted on any discoveries that you make.

p.s.  On the bag and depression thing, just remember that the bag is only part of your exterior make-up kind of like a pair of work shoes you don't like or pair of glasses that keep falling off.  Since it is an add-on it has nothing to do with your internal make-up which is the most important part of you.

John

Total Colectomy with End Ileostomy May 27th, 2008


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 6/21/2008 5:34 PM (GMT -7)   
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.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/21/2008 7:56 PM (GMT -7)   
scrappy, may i ask why you hate the bag so much?

as for the BCIR, i looked into it and a few things about it bothered me, there have been very few of them done so far, and only a few hosptials perform them, so if you have a problem, you have to go back to that hosptial. its a relatively new surgery, and from what my surgeon told me, it still has a few "bugs" to work out.

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/23/2008 1:17 PM (GMT -7)   
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
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


lifescircle
New Member


Date Joined Jul 2014
Total Posts : 11
   Posted 7/4/2014 11:21 AM (GMT -7)   
Not sure I'd use the word "perfected" for BCIR surgery. I've been considering it or a K Pouch. Just found someone completely miserable with extreme pain from BCIR surgery this year. First complaint I found and I'm glad I found it. On this site, too. I'd like to read more updated info on both BCIR and K Pouch folks. Seems I'm finding very old posts.
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