BCIR

[Sharol53]

Hello, I have had a colostomy now for 3 years and was shocked even to hear that there was this procedure available! When I had my surgery for incontinence my colo-rectal surgeon didn't even mention any other options except a colostomy. I had my anus and rectum removed also. I am having problems with the colostomy now...a huge peristomal hernia, wrong placement at my belt line and I am getting to hate having to leave my desk every few minutes to push the poop down or open my pants or some sort of rearrangemnt so I don't pancake or have a blow out. I have tried ALL the suggestions and even tried irrigation but nothing works.
Can I hear from folks that have had it and how they like it or not. Is there anyone out there that had a colostomy first then had this done?
Thank you.

[Lynne]

The only BCIR's or Kock pouches that I know of were to replace ileostomies, but that doesn't mean they aren't done for colostomies. I have had my Kock pouch since 1990. Before that I had a traditional ileostomy. Your surgeon would probably know best if it was on option for you.

Please feel free to PM or email me with any questions you might have.

[Dutchie]

Hi, Been There, Done That. Allmost Died 2 years later from a build up in feces that never made it to the pouch. Have Blockage, over blockage, THE WORSE DECISSION I EVER MADE.

Have your stoma re-aligned. I just have my Illio stoma put into a new spot. EAsy surgery, and it is perfect. Had my stoma doctor mark the spot, tell the size of stoma she wanted and its in a perfect location.

Once you go from a appliance to a pouch...... your life as you no it will become nothing but problem matic. Plus your foods you can eat become even MORE restricted. When I hade the BCIR, I couldn't eat any bread. I had some stuffing at thanks giving and had to fly to flordia to get unblocked. Anything goes wrong you have to spend $300 for airfair to even get it looked at.

Have a rethink is my suggestion.

Cindy

[Ronb]

Well I just have to say that what Cindy went through with her BCIR is not the norm.

I had an Ileostomy and the bag on the side for 20+ years and I had a number of problems plus painful blockages. Back in the 70's there was not a forum that you could ask any question and get answer from people that had gone through the same things.

The painful blockages were about to push me over the edge when my wife found an ad in the Parade mag about the BCIR. I called the number and got information on it.

I have now had my BCIR for 10+ years and not a single blockage yet, and I can eat nearly anything I want. I have had a few bouts with Pouchitis but I will take that problem any day over haveing to deal with intestinal blockages.

Not everybody is the same. What works for me may not be what will be the best for you. The best thing you can do is educate yourself on the subject.

[susan f]

The BCIR, like the Kock pouch and J-pouch are internal pouches constructed from ileum. People who have them have no colon at all.

In the case of the BCIR and Kock pouch a valve is constructed and you have to intubate in order to empty the pouch. In the case of the J-pouch the pouch is connected to the rectal muscles and the anus is left intact.

Because the stool has to be loose enough to come out through the tubing, I would doubt that it would be successful with any intact colon, but I could be wrong.

I would investigate both BCIR and Koch pouch, but I really think that you would have to have the rest of your colon removed.

[Lynne]

Susan is absolutely right. I have had my Kock pouch since 1990 with absolutely NO problems thus far. (thank god !) I would be glad to answer any questions you might have.

[Dahlia]

After 21 years of ulcerative colitis, I had my colon removed and an ileostomy on June of 2006. Six months later I had a BCIR with Dr. Don Schiller. It has been 1 1/2 years.

Each day I am grateful that I have the BCIR. And that is with some difficulties along the way: 2 stoma revisions within the last 6 months with a hernia thrown in with the last one. For the last 2 months I have been recovering from allergic reactions to antiobiotics and lactulose! A blazing reaction to lactulose where I thought I would never recover!

And with all of that, I would never want to have a bag again on my belly. That brought all sorts of other miserable problems.

What I really want is my body to work the way it is supposed to operate. Not possible any more. And I remind myself constantly that how lucky I am that I didn't have cancer.

So, while it is not perfect, it consider myself among the fortunate.

Best,
Dahlia

[Paully's5.0]

When I decided to have surgery (for UC) I found my options to be a BCIR, J-pouch, Koch pouch and an illeostomy.

It was a hard decision and the main thing that I didn't like about the BCIR was the lack of a "supporting" cast. Being in WI, Florida is a stretch as someone else has already mentioned.

Personally I think the best route it is to find a specialist near you! There happens to be a great surgeon for the J-pouch in Wisconsin, plus Mayo is not to far if my surgeon ever left. Because of the supporting cast in the area for J-pouches it made the most sense for me, especially knowing that I wanted to avoid an illeostomy if at all possible.

[woodstock69]

My son has a k pouch.
He is very happy. He had a valve revision and now has no problems. The valve has been perfected with the right surgeon the k pouch has had a good success rate. I have a thread on jpouch.org with all the Drs I have located who do the k or bcir, continent ostomy either way.One does not have to go to FL, there are several west coast drs from san diego-usc and in between
texas, NY,new orlean, virginia.
I have had a j pouch 20 years.Not everyone has bad experiences.
There are thousands of good outcomes.
Asking any surgeon may not give you a straight answer. Most have limited knowledge of what other surgeons do as I have found through conversations with several.
I highly recommend researching for yourself and check out the jpouch.org site in the Kpouch korner forum.

[Flemmart]

There are problems across the board - the perm ileo (1979) caused me a great deal of grief since I was so allergic to all the bonding stuff and nothing helped.

I had my Kpouch 1980. I had the nipple valve repaired in 1981 and 1985, but that was in the early days before they perfected it. No problems with it since.

I agree that you should research as much as you can and ask your doctors questions.

[davidnw]

After 21 years of ulcerative colitis, I had my colon removed and an ileostomy on June of 2006. Six months later I had a BCIR with Dr. Don Schiller. It has been 1 1/2 years.

Each day I am grateful that I have the BCIR. And that is with some difficulties along the way: 2 stoma revisions within the last 6 months with a hernia thrown in with the last one. For the last 2 months I have been recovering from allergic reactions to antiobiotics and lactulose! A blazing reaction to lactulose where I thought I would never recover!

And with all of that, I would never want to have a bag again on my belly. That brought all sorts of other miserable problems.

What I really want is my body to work the way it is supposed to operate. Not possible any more. And I remind myself constantly that how lucky I am that I didn't have cancer.

So, while it is not perfect, it consider myself among the fortunate.

Best,
Dahlia

I've had quite a history, first an emergency illeostomy for a ruptured bowel, then a Kock pouch, but that kept on needing revisions, (and then my doctor, Dana Launer died), and then a revision back to the illeostomy, which I've had for 18 years now. It keeps humiliating me by leaking of falling off in public, and is basically unbearable. So, I talked with Dr. Schiller a few years back, but circumstances prevented me from going through with it. Now, I don't think my Blue Shield will cover it, and even if they do, the copay is likely out of my reach, and the hospital and other doctors involved probably won't accept it. I'm at the end of my rope; I don't really want to live like this anymore. I fear going out in public, I can't take any trips, I'd just rather die than continue on like this, and I don't know what to do.

I'm glad it worked out for you, though it wasn't perfect; I'd take not perfect over what I have now any time, but it just won't happen for me.

Best of luck for you going forward,
David