A BIG question: Permanent Ileostomy/Kock/BCIR?

[Jimmy23]

Hello everyone.

I've had a permanent Ileostomy (UC) now for three years and although I've coped with it and am healthy, the thought of going "bagless" is such a turn on, I'm considering another operation to have a kock pouch or BCIR.

I mentioned the kock pouch to my surgeon one year after my operation and he brushed it off as being problematic. After that, I didn't pursue it as an option, as I didn't know that the operation could be done in Canada. I now know differently.

I've read about successes and failures online and am looking for opinions. Like I said, I'm healthy and I don't get blockages. I eat anything I want to - I mean anything! I've also found a great appliance that works for me, although there can still be leakage problems when sitting when wearing certain clothes... you guys know the story. Just the thought of wearing clothes that fit properly, throwing away my sweat pants, tucking my shirt in again is making me seriously consider going through another operation.

I had my Ileostomy just weeks after I discovered that I had UC, so I didn't suffer for years before the operation like some people here.

Any regrets? Any advice? I've read about complications and definitely don't want to take on new problems. I've also read that the surgery is much more successful than it was years ago. Another question, will the operation and recovery be as bad as it was when I had the permanent Ileostomy, which was no fun? I even developed a clot in my leg.

I look forward to hearing from you.

Jimmy

[mod_kitty]

I've had an ileostomy for 27 years, and have spent 27 years unhappy. In my early 20s I was dealing with other health problems so I wasn't able to enjoy life or date. The last few years have been some of the most depressing ones of my life. It's hard to be a young woman trying to date with an ostomy bag. I've had so much humiliation because of it and have had a hard time finding someone to accept of it.
So I recently got a K-Pouch. I can now wear whatever I want, go out without immediately looking for a bathroom, swimming without having to immediately change a bag, go out on a date without the thought of how to explain things in the future, exercising without having the bag slide off from sweat, having embarrassing accidents, and generally not having to carry a bag of stool around! It's so liberating. The way I see it is that every type of ostomies have their problems, but the K-Pouch adds a great amount of liberation to your life. IT'S AMAZING!

Even if you keep the Ileo, you can always think of this in the future. It's tough, but if you are confident enough you can get through all the tough things that come with the ileo, that will work out great for you. But the liberation of being bagless is something I can't describe. Think about a pros & cons list, that might help!

[kairvin427]

mod_kitty,
My husband has had an ileostomy for almost 5 years. He's strongly considering a reversal. He has a few concerns, and doesn't know where to start to get his answers. Like, I know one is that he's concerned while traveling and taking catheter...how do you do handle that? I'm thinking he's thinking of even just simple trips to the shopping mall 30 minutes from home, as well as longer. And, how do you know when you need to "empty"...is it a similar sensation of needing to use the restroom? We go back out to Cleveland Clinic on February 9th to have another discussion with Dr. Lavery. The first time, he told my husband he needed to lose 40 pounds. He has done that (and then some)...so he's ready physically, I think....he's just trying to figure out what to expect otherwise.

I'm asking for him and he's not here with me at the time but I was afraid I wouldn't bookmark this right or something and lose you. Any advice you can give would be greatly appreciated!!

[Flemmart]

Hi! This is a great start asking questions. I encourage him and you to read and ask questions and consider pros/cons against his lifestyle. Another forum with info from both long term kpouchers and newbies is at:

http://j-pouch.org/eve/forums/a/frm/f/5531006091

He should be the one to get a real feel for what a kpouch is all about - especially from a man's point of view. It's been a godsend for many of us folks that had their rectum removed at the same time as their colon and had issues with a traditional ileostomy.

I had an ileo in 1979 and my kpouch in 1980. I have been very blessed with only a few valve revisions in the 1st view years before the kpouch valve was perfected and has been fine since 1985. No pouchitis, blockages, hernias, etc. The urge is simply a feeling inside as the pouch is made up of intestines and gets full after eating and caused bloating feeling, cramping - he'll know. He has to be willling to chew chew chew foods and may have to give up skins, mushrooms, olives, etc. - foods that have a hard time breaking down. Not because they'll cause an intestional blockage, but because they get stuck in the cath and you have to manually pull out the peice with your finger and a peice of tissue and interbate again. I've done it so much, I eat alot of fiber foods and just deal with it.

Guys can carry the cath in a small leather case or the like. I know folks with diabetes carry their testing and needles same way. He'll wear a small flat patch (the kpouch stoma is flat and very small) over the stoma and can swim, exercise, etc without concern for anything leaking.

I'm glad they asked him to loose the weight prior to surgery - that is an important component - and he should try to stay within 20 lbs or so after surgery. I was so skinny and gained the 10 lbs they asked but gained 65 lbs over that over the years and lost 35 and it still functions fine. But, extra weight can put pressure on the valve and cause problem with getting the cath in.

I'm happy to help with more questions - it's alot to absorb and it's a very unique surgery - and wish more surgeons would offer it. Best to you both!

[CindySam]

I have a BCIR and feel as "normal" as can be. I drain my pouch with a short catheter about 3 times a day. I usually visit the bathroom based upon my schedule rather than need. I go to the bathroom before work, after work and then before bed. I carry a catheter in my purse but if I am not carrying one, I know that I have it in the glove component of my car in case of an emergency such as food that may not agree with me. The site mentioned above is a good source for information as is http://www.bcir.com.

[Julika1]

Hi,

I'm a new member writing to you from Ontario, Canada. I have a permanent ileostomy, as my famous Canadian doctor at Mt. Sinai said that I was not a good candidate for a J pouch due to my age (57) and my weight (200lbs.) I had my rectum and anus removed as well. Do that mean that I CANNOT HAVE a BCIR? Sorry I'm confused.

If I can, where can I get it done in Ontario, or Canada?

Thanks very much for the reply,

Julie G. from Bancroft, Ontario.

[Flemmart]

Hi - yes, unfortunately you'd need your rectum/anus to have a jpouch. But, for those without it, a kpouch or bcir is an option. Dr. Zane Cohen, Dr. Robin McLeod at Mt. Sinai in Toronto (416-586-8346 ) are performing kpouches (a continent ostomy but a different valve ). They'd be the best to consult with to determine if you are a candidate or not based on weight, your health history, etc. As I was leaving the hospital during my initial surgery, another women who was 60 was having her kpouch surgery. I absolutely do not feel age is an issue unless there are other health issues going on. I'm 51 and hope to have it the rest of my life! Best to you!

[Ronb]

While getting the BCIR may not be the best decision that I have made in my life, but it ranks right up there near the top. While wearing the bag for 20+ years it was constantly on my mind, was it going to leak today, will I burn holes in the bag while welding today, will I catch the clip on the ladder that I am carrying and flush the contents down my leg, what is my wife going to say if it comes off durning the heat of passion...too many downer's to deal with it each day.

With the BCIR I completly ignore it till it reminds me that it is time to releive it. The last nearly twelve years is no comparision. No mess's, no smell's, no one knows it's there. The only downer is going through another surgery and the recovery period, and that's it.

[Lynne]

I had a Brooke Ileostomy for 13 years before changing it to a Kock Pouch in 1990. I've never regretted my decision. My reasons were the same as many already mentioned: self image, not wanting to wear the "outside" pouching system, etc. Realize that this may or may not be a realistic option for you. A consultation with a surgeon who is an expert in these continent procedures will advise you if it is right for you.
Good luck,
Lynne

[julesmules]

I've had my Kock pouch for 2 years now and think that it is really fantastic! Usually I totally forget about it and have to remind myself to empty it - which is 3 times a day.
The surgery was carried out at The John Radcliffe Hospital, Oxford, UK. I was the first patient to have this type of surgery for over 20 years there.
I can really enjoy life again after so many years of ill health. I suffered from Ulcerative Colitis for 12 years and then required an emergency colectomy. The surgeon created a J pouch which was a disaster for the next 13 years. My surgeon in Oxford tried to redo the pouch but discovered that it was impossible, due to the fact that it had obviously leaked in the early stages! I ended up with a permanent ileostomy. After 11 months the same surgeon agreed to give me a Kock pouch and I can't thank him enough.
Julie

[tiny2120]

Hi, I'm preety new to this illiostomy experince. For the most part I can deal with it just fine. I stay in doors due to the accidents I've had while on outtings. Anyway enough of that. can someone tell me what a " BCIR" is exactly.

[LindaAukett UOAA Advocacy]

A related discussion is going on at http://www.uoaa.org/forum/viewtopic.php?f=2&t=15160 - the one who initiated that came at it with a different question, but there are thoughts shared there that might add to your considerations.

BCIR stands for Barnett Continent Internal (or Intestinal) Reservoir. It is Dr Barnett's improvement on the Kock Pouch by doing some specific things with the valve that comes out to the abdominal surface. Dr. Barnett is no longer with us, but some who learned from him are doing this procedure.

Linda

[Dahlia]

I am so grateful for my BCIR and Dr. Don Schiller in Los Angeles. After 21 years of UC, I had to have my colon out due to changes in the tissues (not cancer, thank goodness). I lived with an ileostomy bag for 6 mos until I was strong enough for the BCIR surgery. Every day of my life was a struggle; all the same complaints everyone tells about leakage, smell, discomfort, gas, fear. And every day I am thankful for this wonderful invention that gives me freedom and comfort. It is not the same as nature provides but it works wonderfully. I have had a few surgeries since the original in 2006 b/c of necessary adjustments but since one year ago, I have not had any. It will mean adjustments in food but that is a little compromise for the relief this technique offers. Good luck and I hope you find a great surgeon to help you along the path to better comfort and happiness with this part of your life. Dahlia

[Jimmy23]

You know, I'm still on the fence with this one.

Aside from my "big" operation - wow, 5 years ago - I haven't had any other operations, before or after, and I'm pretty healthy.

I've also found a pouching system that is great. I usually get 10-13 days wear from it, still I would really like to get rid of the thing. In the past 5 years I've become an expert on public washrooms.

I cringe at the thought of another major operation. I'd like to just snap my fingers and have the change made.

[spunkylady]

I also am from Canada and had a continent stoma approx 2 years ago.. I am not sure but I think it is as kock pouch. It was made from a neo bladder that I had 6 years ago that did not work out for me as a women. I cath my stoma every 4 hours and let me tell you it is a lot better than the incontinence that came with the neo bladder.

I had my surgery at Sunnybrook Hospital in Toronto by Dr. Herschorn. Unfortuantely I live 1600 miles away and follow up has been a challenge. The surgery was rough I am not going to lie, but worth it.