BCIR Ileostomy anyone?

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sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/19/2008 10:33 PM (GMT -6)   
I thought I would check to see if anyone here has a Barnett's Continent Internal Reservoir ileostomy.  I just read about it today and got kind of excited.  I do have a Crohn's dx, but it's actually indeterminate.  My biopsies and Prometheus test show UC but I have a fistula and tags.  I wanted to see if anyone here had any info.
 
Thanks so much!
 
Shari
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 5/20/2008 7:13 AM (GMT -6)   
Shari,

I haven't seen anyone around here who has a BCIR but you can meet them on their discussion board at www.bcirostomy.org As far as I know the surgery is only practiced at 2 US hospitals but the folks who have had the procedure are very helpful and supportive.

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


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/20/2008 9:27 PM (GMT -6)   
Thanks Sue. I called the FL clinic today, but it sounds iffy about whether I'm even a candidate. I appreciate the info. After today (two days in a row of fever, more pain and increase bleeding), 5 days into my third Tysabri infusion... I am ready to throw in the white flag. I so much want my life back!

Thanks so much again to all of you who share your experiences here on this board. It's very helpful and makes me feel not so alone! Actually, I have a friend nearby, (I met online) who is also more than likely getting an ileostomy this summer with the same surgeon. Who knows, maybe we can make it fun. ha! :-)
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 5/20/2008 9:59 PM (GMT -6)   
There are a couple of things to bear in mind regarding a BCIR:
 
1)  There are only certain hospitals which do the surgery. If you don't live near them you must be prepared to travel back to them should you ever have a problem after your surgery since local doctors and hospitals won't touch it.
 
2)  If there is any doubt about your diagnosis (ie there's a chance you might have CD) you won't be eligible for the surgery.
 
Good luck.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/21/2008 8:04 PM (GMT -6)   
i looked at the BCIR too, and it sounds so great but once i started reading more and more about it, it seemed like it had a lot of "kinks"
the worst part being the traveling thing!

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/23/2008 6:06 PM (GMT -6)   
The BCIR does sound very exciting. I've decided if/when I opt for surgery I will most definitely go for the BCIR. I'm only a half an hour away from the Florida location and my mom works for Palms in Largo which is associated, I didn't realize it was a Palms hospital until now. Neat!

Have you had them send any literature? They mentioned on their site that they have DVDs and such. I think I will ask them to send me one.

Do you live in Florida?
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)
 
 
 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/24/2008 10:40 AM (GMT -6)   
There is a clinic in CA and the one in FL. I called the FL clinic and the woman was very helpful. She did send out a nice informational package with a CD. I haven't had a chance to watch it yet as it just came in yesterday! I am not sure that I am a good candidate due to CD type of complications. I am "indeterminate" in that the biopsy and Prometheus show UC, but I have more Crohn's like symptoms. I am going to get the opinion of my surgeon here at home too.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


Dudley
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/8/2008 2:51 AM (GMT -6)   
Stay with your Ileostomy if you have a hint of Crohns.
The BCIR has worked so well for a lot of people, but has been a disaster for others, mainly CD patients.
If you are half way happy, stay and pray.
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