Vanessa,

Nice to know there are repair options for wonky BCIRs besides end ileostomy. Sure would be nice if everything worked the way it is supposed to right out of the gate, eh? But, stuff happens sometimes, and I suppose our underlying diseases do not help in that regard.

Fingers crossed that Dr. Dietz has her back on track! I do like that term, pouch flipping!

Jan

Well the BCIR had no issues itself. She developed a fistula from fluid build up due to trauma from intubation they think.

Lets hope! She has a very long history of ostomy, jpouch, ileostomy, BCIR, kpouch and now temp ileo to be burned out from many years of hell. Very sweet girl too.

I just never knew pouches can be flipped around. I guess something to consider if you form a fistula see Dietz (plus he is hot! shhh I didn't say that)

Yeah, fistulas can wreak all sorts of havoc, where ever they are. There are many, many failed j-pouches that had perfectly good pouches, but the fistula made them fail functionally. Sometimes they can salvage, sometimes not. But, I guess with the continent ileo pouch, there is more room for creativity, just like sometimes they can salvage a j-pouch and make it a k-pouch!

I guess Dr. Deitz is the new heir apparent for Dr. Remzi these days?

Jan

Remzi no longer works on continent ileos since being promoted. Dietz and Ashburn now work on them.

Well guess her only benefit to the fistula with a BCIR is they just slapped an ostomy bag over her hole until she had surgery. No idea what it is like with a jpouch. It was still very hard for her to deal with. She had an ostomy bag over the valve and the fistula for a month or so I want to say then she got to sick.

Vanessa,
I do not know if Dr C developed that technique but he did use it on me at least once when I had complete valve breakdown in 2007...they cut up about 30cms from the afferent limb (the incoming part of the small intestin into the pouch) and unhook the pouch/valve from the wall...then they remove the old valve(essentially liberating the pouch from the abdoment altogether) and flip the pouch over, reattach the old stoma end to the afferent limb and use the dangling 30cms of small bowel to create the new valve...really is cool...when I asked Dr C if it was a 1 time fix in case of valve failure he told me that once the pouch is vascularised when reattached he can do it as often as needed (hopefully not needed!)...meaning that you have a seemingly endless supply of material to create a new, vascularised valve (short gut syndrom not withstanding)....
So, yes there are solutions to slipped valves that do not involve losing the pouch altogether...you just need to find someone who knows how to do it and is willing to try...
I believe that he did the same thing to another k pouch member here who had repeat valve failure.
sharon

Oh that isn't the reason. She has had too many surgeries for one and if she had CD they had no plans on fixing the valve. Her valve was not a concern though it was the big gapping hole in her abdomen from the fistula.

So why would they 180 her pouch and go through all of the risk of rebuilding a valve if she didn't need one? I have had peristomal hernias, abdominal necrosis behind the pouch and stoma prolapses that compromised my stoma opening and they just moved my stoma (unhooked the valve and moved it either up or down and then rehooked me) but they only rebuilt my valve when it was either slipped or torn or irreperable. They have repaired my valve numerous times but only changed it completely once...makes no sense unless it was irreperable.
Sharon

The flip has nothing to do with the valve repair. It was to fix the fistula. Thought I cleared that up in the first post. the valve wasn't going to be done in surgery but since she was having some issues with it and Dietz saw no Chron's he just did a new one while he was at it and thought it was ok.

Sorry, missed that part...cool that he would do it for that with such success...they could learn a thing or 2 out here in France...they just chuck them and give up for fistulas here.
Sharon

i might have a consult with Dietz in a few months to discuss a kpouch. since they are not confident in fixing my current leaks.I have heard the BCIR is better than the kpouch? is this true?

It is hard to say that the BCIR is 'better' than a K-pouch. They are basically the same. What sets the BCIR apart from the standard K-pouch is the way the valve is constructed. The BCIR valve uses a small segment of intestine that 'wraps' around the base of the valve. This segment 'communicates' with the pouch. In other words, as the pouch fills with fecal matter, this segment fills and tightens a bit and supports the base of the valve - keeping it from bending, so to speak. According to their literature, this lessens the chance of the valve slipping which can result in leakage. BCIR valves do leak at times. But they probably leak less than a traditional Koch pouch. Susan Kay can send you literature about their procedure. Also, they hold seminars around the country. The surgeon usually attends these seminars to answer any questions. Go to www.bcir.com You may find this helpful. By the way, I have a K-pouch.

BCIR has a seminar coming up...Sunday, April 27, 2014 - in Columbus, Ohio. See www.bcir.com for details.

I agree with Bodoni,
They are fundamentally alike...the BCIR is just a modified K pouch with a slightly different valve but both have their advantages and quirks...they both have continent valves that are their weakest link being that by nature they are fragile but a lot of K pouch surgeons are now wrapping a piece of the small intestine around the base of the valve to give it more stability.
There are k pouchers on this site that have had their pouches, without problem, for over 30 years while others like me have had to have fixes for various problems.
Not an advocate for one over the other...My criteria is if the center is closer to home for follow-up, the surgeon has a team that can treat you if you need help and a good attitude towards patients.
The rest is a question of Pepsi vers Coke.
And of course whatever your insurance will cover.
Good luck
Sharon

IF the modified version works better, why dont all surgeons just do the procedure? or do they? they just cant use the term "BCIR" cuz its copyrighted..Does anyone know if Dr.Dietz at Cleveland Clinic does the "modified" version??

First of all, not all surgeons believe the BCIR is the best procedure. Plus, surgeons tend to perform surgeries that know how to do. I would ask Dr. Dietz if he has made any improvements to the K-pouch since it was first done in the USA in the late 60's and early 70's. I had my K-pouch done in NYC in 1976. If I were to have a valve repair done now, I would ask Dr. Bauer if he has developed any improvements to the procedure over the years. I would explore the BCIR as well.

Poucho,
Not all k pouch surgeons believe that the BCIR is better...from the ones that I have spoken to, most think that it is good and has some very good points (some of which are worth copying) but not necessarily better...just different and slightly more complicated to make.
I have never seen studies (never looked for them either) but they have mostly the same long-term outlook.
I would talk to the surgeon and see what he has to say and then speak with Susan Kay over at BCIR and compare notes,
In my case, beyond the medical considerations and because I was paying out of pocket (and am still paying & years later) It was a financial consideration too. BCIR cost, at the time, around $130,000.00 if I remember correctly whereas the K pouch was done in a public teaching hospital and cost me about half. I also had more freedom with my k pouch surgeon on length of stay in hospital and post op follow -up.
The final deciding factor was that I had where to stay for the k pouch but would have needed book hotels, flights etc for Palms of Pasadena.
Maybe money shouldn't be a consideration when choosing your medical care but it is for many of us.
Sharon

i have hit my in network deductible so after i have paid several thousand dollars this year already, I am covered pretty much 100% for rest of this year.so if i decide on the kpouch it should be covered 100%. The BCIR i'm sure is out of network so it would be additional charges. not to mention Cleveland Clinic main campus is 20 minutes from where i live. the only issues would be 4-6 weeks off of work and short term disability does not cover the bills, as far as child support and whatever else...

BCIR is covered by health insurance. I am on Govt insurance and got it done. The bill was 96k and I paid 300 deductible, the kpouch can be 100k at CC.

Wouldn't it depend on whether your doctors and facilities are in network? The procedure itself is only part of the equation. Many plans do not allow out of network care when there is similar and adequate care in network. Most of us could not afford the the out of network costs.

Jan

I have Military insurance, nothing fancy. It was in network. Palms of Pasedena takes many health insurance plans. My one friend just got on the affordable health care and nobody at CC takes is Blue Cross plan he got on with it. So, depends on your health insurance and if Palms takes it or the other BCIR surgeon in LA.