I've had Ulcerative Colitis since I was 12, and well, I've had enough!
I'm due to see the surgeon next week to dicuss my options. I'm pretty sure he's going to do the J-Pouch dance and convince me that's what I should do, but I'm still unsure it is for me.
I've been reading about the BCIR, and it's sounds very interesting, but I'm in Australia, so with two continents and an ocean between me and the surgeon, that could pose some problems, lol.
I've heard a little about the Kock (Koch) Pouch, on which the BCIR is based, but only a little. I'm having trouble finding much info about it, or finding anyone who has had it done.
I want to find out as much as possible about my options before my appointment, so I will know what questions to ask and wont be totally confused.
So, has anyone heard of/had a Kock Pouch operation?
Ta.
23 yrs old ~ 4g Salofalk p/day ~ seeing the surgeon on 30 August
23 yrs old ~ 4g Salofalk p/day ~ seeing the surgeon on 30 August
Hi lixxie.
I have sent you an email with some info. Let me know if you don't recieve it.
Sue
I have sent you an email with some info. Let me know if you don't recieve it.
Sue
Thanks, I have. And I'll certainly look into it. Thanks again.
23 yrs old ~ 4g Salofalk p/day ~ seeing the surgeon on 30 August
23 yrs old ~ 4g Salofalk p/day ~ seeing the surgeon on 30 August
I have a friend that had the K-pouch surgery about 8 months ago. The recovery for him was extremly fast, i saw him about 2 1/2 months after surgery and could not tell, he looked no different. He is very happy with the surgery and says he can eat almost anything (no pine nuts or things of that nature). The only disadvantage to this surgery and why it is a bit dated to the j-pouch is you need to carry a tube (capiture) with you to stick in a hole around your belly button to empty. He said he empties it 2 times a day but it has gotten caught before and was hard to get out. He also said it is sometimes embarssing when he is in public and has to empty it because he has to wash the tube out every time he uses it and most people give him strange looks. From the people i know that had Jpouch seem to be doing very well but it is a longer recovery. The doctor left him the option to change the k-pouch to a j-pouch (left a few inches inside) but sais the longer he waits the harder it will be to reconnect. I personaly would go for the J-pouch but it is a very personal decision and different for everyone.
Thanks Medicine Tongue. Yeah, I'm leaning toward the j-pouch, and if that fails perhaps then investigate converting to a k-pouch. My surgeon doesn't perform k-pouches but knew of a collegue here in Melbourne who does.
BTW, I've been reading a lot about all this, and someone with a k-pouch said that they sometimes put the tube in a zip-lock bag and wash it later. Might be an idea for your friend.
23 yrs old ~ 4g Salofalk p/day ~ saw the surgeon, still deciding
BTW, I've been reading a lot about all this, and someone with a k-pouch said that they sometimes put the tube in a zip-lock bag and wash it later. Might be an idea for your friend.
23 yrs old ~ 4g Salofalk p/day ~ saw the surgeon, still deciding
Hello Lixxie,
I just wanted to tell you a little about the BCIR. I had my surgery on July 22nd. I am 7 weeks post op and feel absolutely great. I have not felt this good in years. Rinsing off the catheter can get a little embarrassing but you can put it in a bag as stated in the previous post. I try not to do it in public unless absolutely necessary. I had looked into he j-pouch and had my surgery scheduled for it last year. Something told me not to do it so I didn't. I do not like the fact that you still need to go to the bathroom and it still controls you. With my BCIR I go when it is convenient for me. I do not have accidents or leaks. I know a few people who have the j-pouch and they still have flares because the small section of the rectum can still flare with UC. I know 3 that are taking Remicade treatments because of it. I had surgery to stop all of that. A man from my church just got out of the hospital with a flare with the j-pouch. Plus alot of people end up wearing diapers at night so not to have accidents in the bed. No thank you. I had accidents from the UC. I thought having surgery is supposed to solve those problems.
I feel great. I even went to Gatorland last week with my family. I never expected to be out and about this soon after surgery. Yes coming to Florida can be hard but there are patients from all over the world that come here to have it done. It is worth the trip and will change your life for the better. I looked at it as an investment into the future with my kids. I am 29 with 2 kids. They need me healthy and ready to go when they are.
If you have any questions feel free to ask. I have no regrets and happy I can now enjoy life again.
Janene
I just wanted to tell you a little about the BCIR. I had my surgery on July 22nd. I am 7 weeks post op and feel absolutely great. I have not felt this good in years. Rinsing off the catheter can get a little embarrassing but you can put it in a bag as stated in the previous post. I try not to do it in public unless absolutely necessary. I had looked into he j-pouch and had my surgery scheduled for it last year. Something told me not to do it so I didn't. I do not like the fact that you still need to go to the bathroom and it still controls you. With my BCIR I go when it is convenient for me. I do not have accidents or leaks. I know a few people who have the j-pouch and they still have flares because the small section of the rectum can still flare with UC. I know 3 that are taking Remicade treatments because of it. I had surgery to stop all of that. A man from my church just got out of the hospital with a flare with the j-pouch. Plus alot of people end up wearing diapers at night so not to have accidents in the bed. No thank you. I had accidents from the UC. I thought having surgery is supposed to solve those problems.
I feel great. I even went to Gatorland last week with my family. I never expected to be out and about this soon after surgery. Yes coming to Florida can be hard but there are patients from all over the world that come here to have it done. It is worth the trip and will change your life for the better. I looked at it as an investment into the future with my kids. I am 29 with 2 kids. They need me healthy and ready to go when they are.
If you have any questions feel free to ask. I have no regrets and happy I can now enjoy life again.
Janene
I have a BCIR going on 13 years. I drain my internal pouch twice a day (morning and at bed time). Very rarely do I have to deal with a public bathroom. When and if I do, I take one square of tissue and clean the outside of the catheter. I then fold the catheter in the palm of my hand and out to the sink I go. I have found that throughout the years, no one is watching me.
Hi, I currently have a j-pouch and may be required to go to a ileostomy bag or other internal/external device. I was intriqued by the Kock Pouch but how does the BCIR differ fro the Kock pouch and where is the procedure performed?
Thanks, Peter
Thanks, Peter
The BCIR is a revised version of the Kock pouch. I am not completely familiar with the Kock pouch but have been told that the BCIR is better now that it is revised. But I am not completely sure to the accuracy of that since I do not have a Kock pouch. The BCIR has a valve and also what they call a living collar so there is no leakage .
You can go to www.bcirostomy.com and read about it and email Sue Kay and she can help you and send you a dvd of the pouch and everything. This should answer all your questions.
The BCIR is preformed in St. Petersburg Florida. I live here so it was only a couple hour drive for me. I am so glad I did it and wish I had done it sooner. I am so happy. I even got a job for the first time in 4 years. I a cannot tell you the difference it makes.
Janene
Hi everyone,
I am 19 years old and was diagnosed with UC when I was 13. I have since had 3 major surgeries, plus a stoma revision. (Jpouch-1, temporary ileostomy-2, and then the removal of my Jpouch-3). I have had a permament ileostomy since I was 16 and have tried my best to live with it but I emotionally cannot handle it anymore. I am looking into some alternative surgeries including a newly developed T-pouch (only done in California), the BCIR and the Kock pouch. I live in NY and it would be very inconvenient for me to have to take an airplane to get the surgery done. My dad talked to my colo rectal surgeon a few days ago and he told him that the BCIR was basically the same thing as a Kock pouch. They have made some improvements on it but not enough to warrant going all of the way to Florida to have the procedure done. I was wondering if anyone else needed to make a decision like this and if so, what did they decide to do and how are they feeling now..? I am just at the end of my rope and desperate to do SOMETHING. It took me about a year to convince my parents of the need for me to get rid of the bag, but i think they have finally come around. We are leaning towards the Kock pouch but havent heard the best things about it. Can anyone offer me any advise as to how to go about this process? i would appreciate it...thank you
take care
We are in Australia too. My husband has j-pouch but has much trouble with it (including chronic pouchitis). Looking hard at alternative options now and particularly at Kock/BCIR. We did not think anyone in Australia did Kock/BCIR. Would very much appreciate Lixxie if you could let us know by email who it is in Melbourne who does
Looking also around the world. Unfortunately, American surgery is just too expensive for us without insurance available. Husband is UK citizen so Europe possibly a better option. Any info on who specialises in this work around the world (apart from in US). We want it to go right this time...
Also - I gather that pouchitis can be a problem with Kock/BCIR too. Any difference in likelihood of suffering pouchits as between K and J pouch?? Is pouchitis an expression of the auto-immune dysfunction in that the pouch is being 'rejected'? If so I guess he might be up for the same problems with the K?
Hi Reeza,
Your email is 'unavailable' so I'll just write here what I know, which isn't a whole lot unfortunately. I saw my surgeon (James Keck, he has rooms at St Vincent's here in Melb.) and he's convinced me to give the J-pouch a go. When I met with him, I did ask about K-pouches and he said he thought he knew of another surgeon who still did them, but that they are rare nowadays and problematic ... bla bla (doing the hard sell on the J-pouch!)
So he didn't actually mention the other surgeon by name, I'm sorry. But I guess if you and your hubby are determined, you could perhaps meet with him and get a referral. If you are out of the state, I'm seeing him in a couple of weeks to set a date for surgery and could ask for some names if you like.
My email is lixxie100@hotmail.com if you want to get in touch.
As to the other questions, I do know that pouchitis can be a problem with Kock/BCIRs too. Though I'm not sure about the connection with pouchitis of a J-pouch or the relation to auto-immune dysfunction. I guess that would be a question for the surgeon.
Good luck finding someone, and once again I'll be more than happy to get some names from my surgeon if I can. We all know what a sh**ty disease this is and if I can help, I'd like to.
23 yrs old ~ 4g Salofalk p/day ~ surgery set for April '06
Your email is 'unavailable' so I'll just write here what I know, which isn't a whole lot unfortunately. I saw my surgeon (James Keck, he has rooms at St Vincent's here in Melb.) and he's convinced me to give the J-pouch a go. When I met with him, I did ask about K-pouches and he said he thought he knew of another surgeon who still did them, but that they are rare nowadays and problematic ... bla bla (doing the hard sell on the J-pouch!)
So he didn't actually mention the other surgeon by name, I'm sorry. But I guess if you and your hubby are determined, you could perhaps meet with him and get a referral. If you are out of the state, I'm seeing him in a couple of weeks to set a date for surgery and could ask for some names if you like.
My email is lixxie100@hotmail.com if you want to get in touch.
As to the other questions, I do know that pouchitis can be a problem with Kock/BCIRs too. Though I'm not sure about the connection with pouchitis of a J-pouch or the relation to auto-immune dysfunction. I guess that would be a question for the surgeon.
Good luck finding someone, and once again I'll be more than happy to get some names from my surgeon if I can. We all know what a sh**ty disease this is and if I can help, I'd like to.
23 yrs old ~ 4g Salofalk p/day ~ surgery set for April '06
Reeza, the Kock's Pouch is available at various hospitals in Australia. Hubby's surgeon should be able to find out info for you.
Just bear in mind that if you travel to the USA for a BCIR and something goes wrong with it down the line and hubby needs treatment for it, no doctor in Australia will touch it - you'll have to travel back to the USA for treatment. That could get very expensive :(
Both the j pouch and the Kock's pouch (and BCIR) utilise the small intestines as an 'internal pouch', therefore if he is getting pouchitis with the j pouch, chances are high that he will probably still get it with the Kock's pouch unfortunately.
Good luck with what you both decide.
http://www.ostomates.org
I'm not a complete idiot - some parts are missing!
________________________________________________
Ileostomy for 27 years since I was 10 years old, due to UC.
Just bear in mind that if you travel to the USA for a BCIR and something goes wrong with it down the line and hubby needs treatment for it, no doctor in Australia will touch it - you'll have to travel back to the USA for treatment. That could get very expensive :(
Both the j pouch and the Kock's pouch (and BCIR) utilise the small intestines as an 'internal pouch', therefore if he is getting pouchitis with the j pouch, chances are high that he will probably still get it with the Kock's pouch unfortunately.
Good luck with what you both decide.
http://www.ostomates.org
I'm not a complete idiot - some parts are missing!
________________________________________________
Ileostomy for 27 years since I was 10 years old, due to UC.
Rissy
I had a Kock pouch for 24 years and we had a great relationship. I did me well and I felt fairly normal. As of October '03 I have an end ileo but am scheduled for a second Kock in January (that's how much I liked it!) There are many people around with successful Kocks..you just don't see them on the boards.
Joel Bauer is a surgeon in NYC at Mt. Sinai hospital that has done quite a few Kocks in his day. I bet you can google his name. Another excellent colo-rectal surgeon for Kocks is Victor Fazio at the Cleveland Clinic in Cleveland.
Good luck. I'll help you if I can.
I had a Kock pouch for 24 years and we had a great relationship. I did me well and I felt fairly normal. As of October '03 I have an end ileo but am scheduled for a second Kock in January (that's how much I liked it!) There are many people around with successful Kocks..you just don't see them on the boards.
Joel Bauer is a surgeon in NYC at Mt. Sinai hospital that has done quite a few Kocks in his day. I bet you can google his name. Another excellent colo-rectal surgeon for Kocks is Victor Fazio at the Cleveland Clinic in Cleveland.
Good luck. I'll help you if I can.
Hi All,
Very interesting reading this. I got a bad case of UC in argentina (I'm english) and had emergency surgery there in 2002. I've had attempts at a j-pouch and they have been unsuccessful coz of my bladder being fused to my rectal stump (argentinians saved my life but left too much scar tissue around there). I'm now looking at a kock pouch (the other areas of my lower abdoman are fine). Does anyone know if they are still available in the UK? I'm encouraged by the positive stories re K-pouches on here. I'm gonna enquire with surgeons when I'm stronger and fitter after a recent failed j-pouch op.
take care and happy 2006 to everyone on here
Very interesting reading this. I got a bad case of UC in argentina (I'm english) and had emergency surgery there in 2002. I've had attempts at a j-pouch and they have been unsuccessful coz of my bladder being fused to my rectal stump (argentinians saved my life but left too much scar tissue around there). I'm now looking at a kock pouch (the other areas of my lower abdoman are fine). Does anyone know if they are still available in the UK? I'm encouraged by the positive stories re K-pouches on here. I'm gonna enquire with surgeons when I'm stronger and fitter after a recent failed j-pouch op.
take care and happy 2006 to everyone on here
My son has a k pouch. His j failed. I have had a j for 20 years. I have a list of surgeons who do the k pouch and BCIR.
Feel free to e mail me,
I am always willing to help.
Feel free to e mail me,
I am always willing to help.
There are not any drs currently in Australia doing k pouches. Dr Susan Shedda is getting ready to do them in Melbourne.
She was a fellow at CC Ohio.
She was a fellow at CC Ohio.
I am so glad that I was told about the HW boards. I have learned sooooo much. I have CD and was told that I needed a permanent ileo. But now I am finding K pouches and BCIR pouches. That is two more options that I can ask about. (I'm not a candidate for a J pouches as some of the CD is in my rectum.)
Everyone keep your fingers crossed for me. I'm headed to the CC in April to meet with some specialists.
-K
Crohn's Disease - 29 years
Everyone keep your fingers crossed for me. I'm headed to the CC in April to meet with some specialists.
-K
Crohn's Disease - 29 years
Diagnosed at age 10 in 1979
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
SCUBA diver, Master's degree student, college graduate, Pet therapist
Hi Reeza,
I know this was in 2005 just want to let you know I have now had the K-pouch in Melbourne in 2009 under Prof Mackay from St Vincents and Head of Epworth Eastern Hospital Melbourne Australia. I put some info in the "Ostomy Section". I had the permanent ileostomy and Prof Mackay brought Prof Fazio out from the States and they performed the operation on me last year. It was very tough surgery though I would so prefer this to the ilestomy. It was covered on medicare and through MBF. He is an amazing surgeon and I would certainly recommend him. Prof J Mackay, Epworth Eastern Hospital Boxhill Melbourne Australia and or St Vincents Hospital.
Hope things are alot better (if you want to know further I am happy to be incontact by email
Kind regards
Cors
Better late then never...I had the 31st Kock Pouch in the US back in 1974. Works as well today as the the day it was done. Don't give up hope!