K pouch vs. BCIR

Hi, all,

I have a question for the forum, hope I can get some advice here.

I live in Ohio, very close to Cleveland, I could either go to Cleveland clinic to get K pouch, or got to palms in FL to get BCIR done. Considering the travel and future travel, does the benefit of BCIR over K worth the additional effort and cost?


Thanks.

Still with J
Original Post
The BCIR has what is called a 'living collar' around the base of the nipple valve. As this 'collar' fills will with fecal matter it hugs the valve it is supposed to make the valve more stable and lessens the chance for valve slippage. That is their claim anyway. Call Susan Kay and she will give you a better explanation than I have here.
I would go with CC Ohio. I believe that most k-pouches are now done with a different and improved type of valve and that valve is more like the 'living collar.' Given that you live in Ohio, checkups would be so much easier. There are several people with BCIR's on this site and many more with k-pouches. It seems that those with k-pouches are doing just fine.

In addition to contacting Susan Kay about the BCIR, you can PM members here: Janice, Sharon, and Jasmine would be good k-pouchers to contact.

kathy Big Grin
The CC does the KP that IS NOTHING like the living collar valve. The KP valve was redone from a mesh type years ago but still not "living collar".

If your specific situation is going to be very complicated, then I would recommend CC.

But with that being said, there are many success stories with the BCIR out of FL.
Just out of curiosity, does anybody know why CC Ohio has not adopted the BCIR type valve for continent ileostomy? I can't help but think there must be some downside to the living collar, since CC seems very progressive and up to date on surgical techniques. With the j-pouch, their techniques evolved with emerging trends and data. Is it just a difference of opinion regarding risk vs. benefit, or is there something else going on?

Jan Smiler

Edit: After doing a bit of looking, I found this fine article about the evolution of the continent ileostomy (2012). While it is a great article, complete with illustrations, it did not say why Cleveland Clinic has not adopted the Barnett modifications, but it does say that valve slippage seems reduced with the living collar.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3400848/

This earlier article (2008) indicates that advances in the kock pouch valve reduce the need for the complex BCIR procedure. So maybe that is the reason, simplicity.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780187/
Jan, I cannot answer your question because I don't keep current with that.
BCIR success stories aside, if I lived in Ohio near Cleveland, CC would be my first choice.

My first Kock was at Mayo because in 1979 that is where it was done. For my second, at the time I was a patient at CC here in Florida so it seemed natural to go to Dr. Fazio in Cleveland.
BCIR any day of the week. I was going to go to CC but I wanted the living collar. They can be very weird when you mention the BCIR. I go to CC to see GIs since I have FAP and they frown in it because they don't see the need for a living collar. I actually was very turned off by the better than though attitude. Go with who you are comfortable with and do the research. I researched both for about a month before I made up my mind. CC is great though and you are local so why not. The thing is if you do get the BCIR and use the CC for medical follow ups or any issues they can be your local go to guys.
Hi, all,

I got a private reply, thought to share it here:

Hi! I am in Ohio as well (cincinnati) and had the BCIR done in Florida by Dr. Rehnke. I had it done in March 2010 and have had no issues at all.
If I did, I would not hesitate to go back to FL. I had a great experience there. Dr. Rehnke and his staff are great. I made the trip to FL because I had read/heard/talked to so many people that had it done there and were more than satisfied.
It's nice to go to an experienced surgeon with the Continent Pouch, also the distance in case you should have to go back. I think length of time in the hospital is different between the BCIR and the Kock Pouch also, so make sure your insurance covers it. Do your research before hand.
Insurance usually always covers the BCIR unless you have some weird state insurance. I had a 300 dollar copay and I am on Tricare. the stay is 21 days I Believe and it is worth it. You have the best care you can ever get during that time. YOu are allowed a guest to stay with you the entire time, they have spare beds in your suite and that person gets fed 3 times a day for free. They have washing machines, family rooms to watch movies on the large TV, individual cable and tv in every suite with computer desk and wifi. I never had care like I did at the Palms. CC is great, don't get me wrong, I was blown away by that hospital but Palms of Pasedena have that down like a well lubed machines. First hospital I ever went to that on the plaque said "Continent Ileostomy Center"

The whole floor is all BCIR patients. I made a lot of friends and always had people to hang out with. Dr Rhenke is probably one of the most skilled surgeons I have ever had and I have had a lot of surgeries. He is a good man too. He has donated and done a lot of things in the medical/surgical world to impress me.

My issues were GI related I mainly had after so I went to the CC after but that had nothing to do with my pouch it is a different part of my body. Either way in the end you go with your gut feeling.

The crew at the BCIR center do conferences around the US so maybe see if they are coming to a city near you. BCIR alumni go to them and a good place to have questions answered about the procedure. Also they have online chat once a month so you can join and ask questions there as well since the message board is usually dead, because we don't have that many issues I don't think we use it that much.

If you call Susan Kay at the Palms she can also provide you with BCIR alumni phone numbers and you can call and get reviews or ask questions. I think I had a list of 10 people all with my disease, she matched me with other people with FAP that had the BCIR. Talked to all different walks of life around the US. Helped to talk to people with my disease and have had the pouch for over 20 years or more.
Who is advertising? The guy asked. One of the reasons I stopped coming on this site, people have nothing better to do than attack.

I hardly call it advertising. Oh because I wanted any of this surgery? Right.

It is a vs. question Jasmine. Basically that is someone asking what the difference is and THERE IS A DIFFERENCE in the two. People need their own information and sometimes don't want to read just a website, want real opinions and stories.

Maybe you woke up on the wrong side of the bed but I don't think your comments are a fact so I will ignore them. Hopefully others will to, attack someone else.
You are right Vanessa - there is definitely a difference. But one is not definitely better than another. That goes for any pouch/ostomy procedure. For most, the j-pouch works wonderfully. For others it does not. Many members here have an amazing quality of life and they have an ostomy.

Knowing Jasmine, I don't think she was attacking anyone. She was stating something that has occurred on this site numerous times regarding the promotion of the BCIR.

Yes, an opinion was asked for. But again, I think that each procedure is appropriate for each individual. If I lived near Florida I certainly would consider a BCIR if my j-pouch failed. But if I lived in an area of the country that was nowhere near Florida [or California], I'd go to the best qualified surgeon in my area. As you mentioned, Cleveland Clinic is excellent and from what I've seen on our site, both the BCIR and k-pouch are viable options. One is not superior to the other in terms of success.

kathy Big Grin
Thank you Kathy.

No I wasn't attacking anyone, we have this happen here from time to time. I think researching is important for a surgery like this.

Studies are the way to research, not by people who are satisfied with their particular surgery. Of course you won't be given names of people who aren't satisfied. There are studies on PubMed, look at the dates when they were done. This is important. There are people happy with all the options of surgeries. That doesn't mean you will be one of them, so do research....look for studies done on the surgery you are interested in. Check out the surgeon, very important with any surgery. Make sure the location is good for you, in case you have to go back for whatever reason. This is a big decision and remember your outcome is an individual thing, so make sure you are going to a doctor with good percentage outcomes...so make sure you have the best doctor and location for your needs. Check studies.....
Guy,
I have had mine for 33+yrs now...it took a while but my k pouch worked wonderfully for 20+ yrs until a car accident. I had it fixed a number of times and finally my k pouch surgeon put on a living collar (he does both)...even that took a few tries.
What I am trying to say is that the only difference is in the quality of the surgeon and his technique & experience and your trust and belief in him/her. There is also a proximity problem. I live across the Atlantic from mine and it is not an easy thing when I need help...so do what you feel is best but the bottom line is still the same...you need to feel comfortable and trust your surgeon with your life.
Sharon

I had my BCIR for almost 20 years, with no problems after the first year, until recently when I had to have some other intestinal work done, which caused a number of new problems.  Basically however, the BCIR saved my life, since the external appliances would not stick to my skin.

 

I should also say they my life has been turned upside down because I have found no one willing to do any form of intestinal surgery because of the BCIR; all of the local surgeons want to remove it, even though it is working, just because they cannot think outside of the box and don't want to risk their perfect records!!!

 

There were times after my initial surgery, and after a recent revision, where I had fistulas from my collar (I have Crohn's Disease), and I have wondered if I would have had the same issue if I did not have a living collar.  I am not saying it would have been different; it just makes me wonder.

 

Personally, I have heard good stories from both.  The recovery from the BCIR is very tough, and I expect it is also tough with the K-Pouch.  If I was to do it all over again; I think I would look primarily at my location, and proximity to surgeons who would work with me.  I doubt the pouches are different enough that I would be willing to travel farther for one than for the other. 

 

For my money, and quality of life, I would look as hard as possible for where the different surgeries can be done.  I would also check with the K-pouch doctors to see if they would work with you after a BCIR, and the BCIR doctors to see if they would work with you after a K-Pouch.

 

I know this is an older post, and I am no longer responding to the original poster; but I am sure others will continue to have the same question.

Gacleader1

You are very right about making sure that your surgeon is a local as possible, that he is openminded and willing to 'cross-control' you if you have either the Bcir or the K pouch...my surgeon in Paris is a great guy, old school but so darned open minded that not only does he think outside of the box, he doesn't know that there is a box.

He does neither k pouches nor bcirs but forms j pouch through laporoscopy and does other keyhole surgeries...his specialty.

When I initially contacted him about my failed k pouch/valve/hernia problems (emergency) he not only listened but requested all of the doc/files etc, met with me and then invited my Canadian surgeon over and gave him priviledges here. Since then he has followed me closely, done 4 other surgeries on me & my pouch solo and invented 2 or 3 totally original techniques for k pouch fixes.

The guy is a God.

You need an openminded colorectal surgeon or internist who is willing to work with you and not against you...they are rare but they exist.

Good luck finding one

Sharon

 

vanessavy posted:
Insurance usually always covers the BCIR unless you have some weird state insurance. I had a 300 dollar copay and I am on Tricare. the stay is 21 days I Believe and it is worth it. You have the best care you can ever get during that time. YOu are allowed a guest to stay with you the entire time, they have spare beds in your suite and that person gets fed 3 times a day for free. They have washing machines, family rooms to watch movies on the large TV, individual cable and tv in every suite with computer desk and wifi. I never had care like I did at the Palms. CC is great, don't get me wrong, I was blown away by that hospital but Palms of Pasedena have that down like a well lubed machines. First hospital I ever went to that on the plaque said "Continent Ileostomy Center"

The whole floor is all BCIR patients. I made a lot of friends and always had people to hang out with. Dr Rhenke is probably one of the most skilled surgeons I have ever had and I have had a lot of surgeries. He is a good man too. He has donated and done a lot of things in the medical/surgical world to impress me.

My issues were GI related I mainly had after so I went to the CC after but that had nothing to do with my pouch it is a different part of my body. Either way in the end you go with your gut feeling.

The crew at the BCIR center do conferences around the US so maybe see if they are coming to a city near you. BCIR alumni go to them and a good place to have questions answered about the procedure. Also they have online chat once a month so you can join and ask questions there as well since the message board is usually dead, because we don't have that many issues I don't think we use it that much.

If you call Susan Kay at the Palms she can also provide you with BCIR alumni phone numbers and you can call and get reviews or ask questions. I think I had a list of 10 people all with my disease, she matched me with other people with FAP that had the BCIR. Talked to all different walks of life around the US. Helped to talk to people with my disease and have had the pouch for over 20 years or more.

I have a long history with illeostomy, then a K pouch, then the illeostomy again.  I hated the illeostomy for obvious reasons, and for a while, the K pouch, done by Dr. Launer was fine.  Then I started getting pouchitis, again, and again, worse each time.  I had to have it taken down to an Illeostomy again.  I've now spent over a decade with that, and I'm at the end of my rope.  I'd rather well, I won't finish that sentence, but I desperately want the BCIR, and have a local doctor and hospital with a very good reputation, and in fact I've met him before to treat my pouchitis.

My problem is cost.  I'm on O-Care, a PPO from Anthem, but they're pulling out of my market come September, I might be able to get on with Anthem, but even if they cover it, there's still a substantial copay.  And if they don't, what does it cost?  I have no idea how expensive this surgery is.  I'm just sort of ruined by the whole thing, the only thing keeping me going is the hope that I can get that BCIR surgery.

Years ago, when I was a stupid kid, the ER surgeon told me as I lay screaming on a gurney, even after a large dose of demerol, that I have two choices, in two to three hours I would be in the morgue, or have the illeostomy surgery.  I stupidly chose the latter.  I'd like to be able to improve that choice today with BCIR, if I can afford it.

Dave, the BCIR is definitely worth fighting for, provided you are qualified medically for it.  You should have sufficient small intestine to make the pouch.  I am assuming from your location that the doctor you referred to in your post is Dr. Don Schiller at Olympia Medical Center.  He has been doing BCIR’s for many years and has an excellent reputation. I suggest that you first contact his office to see if you qualify medically for the procedure.  If so, you can then discuss your insurance situation and the cost of the surgery.  If Dr. Schiller is not in your PPO network, it will be necessary for you to get the PPO’s approval for out-of-network coverage.  This can be challenging, but there is a much better chance of getting approval since there are only two surgeons in the USA who do this procedure.  In light of your insurance situation, it is critical to begin your inquiries as soon as possible.  Please feel free to send me a PM with any questions that you have, and best of luck to you.

Bill

BillV posted:

Dave, the BCIR is definitely worth fighting for, provided you are qualified medically for it.  You should have sufficient small intestine to make the pouch.  I am assuming from your location that the doctor you referred to in your post is Dr. Don Schiller at Olympia Medical Center.  He has been doing BCIR’s for many years and has an excellent reputation. I suggest that you first contact his office to see if you qualify medically for the procedure.  If so, you can then discuss your insurance situation and the cost of the surgery.  If Dr. Schiller is not in your PPO network, it will be necessary for you to get the PPO’s approval for out-of-network coverage.  This can be challenging, but there is a much better chance of getting approval since there are only two surgeons in the USA who do this procedure.  In light of your insurance situation, it is critical to begin your inquiries as soon as possible.  Please feel free to send me a PM with any questions that you have, and best of luck to you.

Bill

Thank you Bill.  Yes, it is Dr. Schiller, and I tried to hook up with him a few years ago.  He was very willing to work with me, but at the time my mother got very sick, requiring 24 hour care, which I provided, despite my pain.  Unfortunately, or perhaps mercifully, she died late last year.  I will begin my insurance search, but like I said, come September, my company, by far the biggest one in California, is leaving the market, and I don't know if Aetna will work, but I'll try.  But my first call will be to him.  He was very sympathetic, despite my somewhat distraught condition.

I won't sugar coat it, I'm desperate.  I don't know what I'll so if I can't swing it.

Add Reply

Likes (0)
Copyright © 2015 The J-Pouch Group. All rights reserved.
×
×
×
×