barnett continential intestinal reservoir

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jawbone
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 3/30/2008 3:43 PM (GMT -6)   
has anyone looked into the BCIR? I have been diagnosed with uc and have tried several drugs with very little help. The next step is to try 6mp and the others. I don't know if I want to do to the effects. What are your thoughts on this proceedure? I tired of the this illness like all of you peeps are. Any help. confused

suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 3/30/2008 4:27 PM (GMT -6)   

Yes, I researched the BCIR when I was looking seriously at surgery.  The BCIR is a proprietary procedure and is only offered at 2-3 hospitals in the US.  The Kock pouch is similar but more widely offered.  I think it's the valve on the BCIR that is proprietary.  You can read more about it at www.bcirostomy.org  They have a discussion board on that website where folks who have had the surgery can answer your questions.

 

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


Red_34
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Date Joined Apr 2004
Total Posts : 23551
   Posted 3/30/2008 5:24 PM (GMT -6)   
Sue, what do you mean that this is a proprietary procedure? I've researched the surgeries available because if I was to have it in the future I would like to know what I'm getting into. The BCIR to me seems like the way I would want to go but many insurance companies won't pay for this type of surgery and without insurance it can be a highly expensive procedure.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 3/30/2008 6:05 PM (GMT -6)   

Sherry,

Proprietary means that the procedure is privately owned and when I checked only 2 hospitals in the US offered it; one in Los Angeles and one in Florida.  This means that should one develop problems with the valve or post surgery complications you must be willing to travel for help if you don't live in those 2 areas.  This does not mean that the BCIR is a bad choice, it's just not widely practiced so resources are limited.  The two hospitals that offer the procedure will work with your insurance company for approval, you don't need to do that on your own.

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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/30/2008 8:34 PM (GMT -6)   
in theory it sounds great, but since it is a new procedure, i think like 500 or so have been done. And like suebear is saying,there are very few places you can have it done. My surgeon advised against he, he said he would get me an appoitment with one of those surgeons, he actually did his residency with one of the surgeons who do that now. Personally i didn't want a surgery that had only been done on that few people.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/31/2008 4:47 AM (GMT -6)   
Gotcha Sue. :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/31/2008 7:03 AM (GMT -6)   
A similar surgery is the kock pouch or k-pouch. Works on the same theory, internal valve and self catheterize. It's practiced at more hospitals than the BCIR. There is a thread on the jpouch board that is strictly for kpouchers.

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


jawbone
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 3/31/2008 10:36 AM (GMT -6)   
Hi Sue, I've heard some horror stories about the j-pouch and i'm glad it is working out for you.. I live in California and one of the places that do the bcir is only 4-hours away. I'm afraid of the j-pouch because I really don't have alot of time to be taking off from work in the event the j-pouch fails. the reason i'm thinking the bcir is because it appears through my research the success rate is higher with the bcir. The bcir has been around since the 70's. My family history is loaded with different cancers and thats why I'm afraid of the 6mp and those medications. I feel I have to make a decision soon because like others i'm tired of feeling ill...

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/31/2008 11:59 AM (GMT -6)   
Jawbone,

Yes, I heard all those horror stories too but didn't find them to be true. The jpouch is considered to be the gold standard for UC or colon cancer. This means it's widely available and is the preferred surgery for teaching. None of the choices we have are perfect, each option has pros and cons that you need to weigh out in consideration of your lifestyle. It's very rare for someone to go straight to a BCIR without opting for a jpouch first. It has happened but BCIR is mostly done for those with failed pouches.

I live in CA too and there are some terrific jpouch surgeons if you want to consider a consult. I would be happy to share their names.

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


jawbone
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 3/31/2008 6:41 PM (GMT -6)   
Sue, I have an appt with my doctor tomorrow and i'll ask about the j-pouch. Problem I see is that my uc is on the left side down to the rectum, which maybe a problem for the j-pouch. I'll have to see what my doctor says about that... When you have time send me the name of the doctors you know of.. Thx..

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/31/2008 8:02 PM (GMT -6)   

Shouldn't be a problem, my UC was virtually limited to the rectum.  If your GI gives you contrary advice I suggest a consult with a CR surgeon.  My GI was not up to speed on surgical issues and tried for me to have a permanent ileo as he didn't think a jpouch would work for me.  He was wrong, surgery was not his specialty.

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


jawbone
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 4/1/2008 8:37 AM (GMT -6)   
Thank you Sue. : )

jawbone
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 4/2/2008 12:52 PM (GMT -6)   
Hey Sue, Well I spoke with my doctor and I'll be trying the 6mp and staying with the entecort and lialda. He did not know much about the bcir, but he is not a surgen. He did suggest that I am a candidate for the j-pouch. He has had three of his clients do it and be successful. he said the surgeries are usually done in the sf bay. who are some good surgens there? I understand the surgery is in two stages? What was the time frame for you from beginning to end. The time between stages?
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