As I am dealing with a j pouch that resulted in daily incontinence, I am thinking about my options. I don't have pouchitis, but have had incontinence since day one with the j pouch. My question is what are the negative aspects of having a K pouch/BCIR? Are you happy with yours? Just gathering opinions to help me plan for the future. I daydream about not having an anus or rectum.....it seems heavenly considering all the pain and problems I have with my anus. (Damn fissures and butt burn!)

Thinking about the very same things... my pouch and I are not getting along very well at all and I too am thinking about the KP. I do have a lot of inflammation though, and I understand that can also be an issue with a KP. It seems like there may be (slightly?) more risk of complication with a KP than with a straight up end ileo, but it sure sounds like a more appealing alternative if everything goes alright. However, there is the appeal of just going to the end ileo and being able to be reasonably confident that most issues will be resolved. I'll be watching this thread!

Hi Girls,
Well I guess that I am the (un)official PomPom girl for k pouchs...I got mine for many reasons but mostly severe IBD and anal incontenece (j pouches were not an option then and even so not for me for obvious reasons)...I've had mine for 32yrs (happy anniversary this Aug 1st)...and loved it most of the time...That said, even though it gave me a life and allowe me the freedom that I had never known it does not go without certain complications...
You need a skilled and experienced K pouch surgeon (Or BCIR) that will be around to follow you over the years or that belongs to an ongoing team of surgeons who will be able to help you in case of vavle slippage or other problems...
The possible complications are usually vavle related (the fragile part of the surgery) or hernia related from weak muscles or extensive abdominal surgery and of course pouchitis...most k pouchs are great and we have some people here who have had perfectly functional ones for over 30yrs...others like me have had various complications (aggravated by living in a country where they don't know what to do with them or how to fix them) and the lack of medical reactivity and follow-up can be a problem.
That said...I still love my k pouch (and my k pouch surgeon) and will fight to the death to keep it working even if it is not perfect...there are limitation when it comes to foods, like chewing things thoroughly and not eating corn, peas or mushrooms and a few other tube cloggers... but I do eat most foods with no difficulty... I just add grape or prune juice to keep things flowing.
I am sure that others will weight in with their experiences but as far as I am concerned it is a win-win.
Good luck in no matter what you choose.
Sharon

I had a j-pouch first and now due to a RV fistula have k-pouch. I love it. In fact, now that it is year 4 and I am really really used to it, I think I prefer it to the j-pouch.
Why?
I only empty 4 sometimes 5 times a day. Thats huge, with my j-pouch it was 7-8 or more if I ate stuff that affected me.
Rarely any embarrassing bathroom noises.
No urgency.
No leaking.
Same with ileo.. no leaking, no nasty plastic bag against my skin all day. no balloons at my side
I Rarely get up in the night to empty...
But the downside of the k-pouch?
Carrying a cath with you everywhere. I was flying from FL back home to ohio, change planes in JFK and realized when I got to new york that I FORGOT to put my cath in my carryon luggage and it was somewhere in the bowels of the airport. I about had a panic attack. I made it home without incident but it was very scary.
Also, the food limitations can be discouraging. But seems like we all don't struggle with the same foods
Its a pain to empty in public restrooms and I avoid it when I can

good luck with your decision!
--
katie

Thank you Katie and Sharon! (Sharon, I responded to your reply on the ostomy forum. Thanks for the information, I really appreciate it!)

I meet with my surgeon on Friday and because of chronic pouchitis have decided to remove my jpouch in favor of an end-ileostomy. I just thought I would research the k-pouch option before even raising the possibility with my surgeon but it seems like the k-pouch would not be an ideal option for someone diagnosed with chronic pouchitis, right?

tiki,
Did they find crohns on your test? I am so sorry to hear this and hope you feel so much better after the surgery, whichever one you decide on. Best wishes to you and getting back to living your life.

I met with my GI last week who confirmed what I know and that is that the drugs used to treat pouchitis aren't really intended for long term use and I have no desire to risk my long term health. He offered to refer me to bo shen t the cleveland clinic but aside from logistical issues from what I've read by others who have seen dr. Shen the treatment is still based on remaining on the drug train. I got blood drawn for the promethus test last week which has a 92% accuracy in trying to rule out crohns. The pathology led my doctor to believe it is not crohns. I hope to have the results beforei meet with my surgeon on Friday. As long as I don't have crohns my plan is to get rid of my jpouch. Its my understanding that wit chronic pouchitis the kpouch may not be a viable option because your still have the issue of stool being colected in places not meant to collect stool. I think other issues including the underlying auto immune issues are at play as well. When I had my ileostomy I really didn't have any problems and was not on drugs. I would like to know from kpouchers why they got the kpouch, whether they had problems with a jpoch first, and any other info that may be useful.

I would be interested in knowing this about kpouches as well. Best of luck to you with your surgical decison.

I am not certain I would drop the cycling medication route (for me) if it helped control the pouchitis as I was on prednisone on and off for years, coupled with sulfazalazine non stop.
After 25 years I am still in tact with no other major illnesses so far (I am 48). As much as I hate drugs also, I would most likely be willing to take them if they improved my quality of life and helped me avoid or prolong another surgery.

It is funny as my GI doc also mentioned for me to go see Bo Shen as they really have no other experts in this arena which is pretty sad in itself.

My firm belief is the small intestine was not deigned to do what we are forcing it to do and it makes sense that inflammation would occur there now that the colon is out, esp if this is autoimmune disease which I am also firmly convinced it is. Possibly some people just get luckier than others with their jpouch results.

Tikibartrauma - I opted for end ileo because of what you reference - you can get pouchitis with k- pouches or BCIR. I also wanted something that would be easily recognized and treated any where I went and the ostomy gives me that comfort. I have no real diet restrictions though I don't eat under cooked broccoli. Raw carrots and peppers and lettuce all fine though i do eat small portions of those. No meds except immodium at night and I can sleep 8-10 hours (if my kids make it that long )

Just a note...chronic pouchitis is not generally an issue with a kp/bcir. I would consult with my surgeon to see if he/she felt because I have it with the jpouch, it would also develop in my new pouch.

What is a downside to some is the diet restrictions. They are not that strict except for skins and food that simply does not break down no matter how much you chew. And, some do not like the thought of inserting a cath into the stoma to poo.

It is major surgery and a big decision but for many with failed jpouches, they have converted to a kp/bcir fine.

good luck in your decision.

I don't come on the site nearly enough, but saw your post and remember the situation I was in a bit over five years ago so decided to respond.

I sent through many surgeries and two JPouches to try and get a functional JPouch. Mine just wasn't to be it seemed. I thought of myself as young and active and couldn't see myself with "the bag" as after so many years on and off meds and several embarrassing moments with th temporary ostomies, my body image was prett low. So I decided to fly off to Dr. Fazio at the Cleveland Clinic and after discussing my case with both he and Dr. Bo Shen, determined that I would be an acceptable candidate for a K-Pouch. This took me by surprise as I figured I wouldn't be a candidate to a promethius test tat came back positive for Chrohns and after having multiple surgeries, I was fearful of short bowel syndrome.

They both said that the promethius test was not worth the paper it was written on (I don't know if it has been updated since this was five years ago, but both of thse experts thought the test was not helpful and in some cases hurtful as it gave a patient an incorrect diagnosis).

I am not sure that frequent pouchitus would prevent you from having the surgery either. The biggest fear I would think (if it were to cross over from having it with a JPouch to having it with a KPouch), would be dehydration. Ths is not a little concern as I have been hospitalized twice for getting dehydrated after getting a stomach flu and my output becoming extremely liquid.

As a poster above me mentioned, my biggest challenge with the KPouch is having to have a catheter with me. I have a routine where I carry a catheter and supplies with me at work in a Padfolio and on trips in a backpack. Unfortunately I have on occassion forgotten the backpack in a car or one time on vacation at a location about an hour and a half from where I was. Cramping set in something fierce, but I survived. Traveling out of the country esecially to third world countries that could not support any types of emergencies we might have is not recommended. So if you like to travel to different places, this surgery might not be for you. If you are ok with traveling to countries such as the US, Europe etc... this shouldn't be a problem.

I empty probably around five times a day and sometimes six. Its no big thing and not an inconvenience at all unless I wait to long before I go (and then there is some cramping, but nothing like when I had UC). I have run a marathon, several half marathons, played volleyball, softball had two kids etc.. with this KPouch and wouldn't trade it back.

I don't get on very often, but am very happy to answer any questions you may have. I may not know the answer, but I can make up a pretty good story ;-)

Mike

Just a footnote to Mike's post...I have had my K pouch for over 30yrs and have had my share of complications along the way, but other than when I had pouch prolapses, valve slippage etc I always traveled and that includes to 3rd world countries (Tunisia, Turkey, Eastern block countries etc)...I have intubated in the most unsanitary conditions known to mankind and a few I wouldn't admit out loud but my pouch survived better than my non-pouch friends and family and their traditonal intestinal tracts...I do agree that there is practically no difference any longer between the Bcir and the K pouch...my K pouch had a living colar on it which used to be the specificity of the Bcir ( I think)...so choose your doc, your hospital and then the pouch...And make sure that your doc has decendants following in his/her footsteps..you will need a lifetime's worth of follow-up...and a kind & friendly staff who are willing to listen to you.
Sharon

@Mike:

It sounds great that you have a functioning K-Pouch despite of the fact that you are suffering from Crohns Desease.

I have Crohns Desease too and got my K-Pouch in July 2009. I was not so very hapyy with the bag on my belly (I have an ileostomy since 1995). But nevertheless in my opinion patients with Crohns Desease should not get a K-Pouch, because there are great risks.

I underwent two valve correction surgeries, but there has always been a fistula in the valve after the surgery.

I am living now with a damaged valve which means that there is a high secretion out of the valve of my K-Pouch most of the time. Also I have my ileostomy and many ugly scars. Therefore my chances for a relationship are zero.

I think that my pouch has to be removed. But because I am healthy and I do not want to go to the hopital (I am working as a freelancer) I am living with the unconfortable situation.

I also know a young woman in Germany who got a K-Pouch and she has extremly great problems now (short bowel syndrome because of unsuccesful surgeries and emergeny surgeries).

In my opinion K-Pouch-surgeries should be forbidden in Germany!

Best Regards
Martin

This message has been edited. Last edited by: Martin73,

I just saw my surgeon today. I now have my second RV fistula in less than a year. I wear a pad 24/7. The skin around my rectum and vagina are like hamburger meat despite liberal use of calmoseptine. I am miserable. He says in his opinion, a permanent ilesostomy is my only option. I mentioned BCIR and he did not even know what it is. I explained it and he said that I would have to go to FL to have it done, I am in GA, and the reason so few doctors do the procedure is because it has too many complications. This is coming from the guy who used a pig skin plug to repair my fistula due to its location so that I would not lose continence. I do not know what to believe. After a very long conversation in which I explained my main concern, beside body image and my age (39), the fact that my skin is very sensitive to adhesives and I was completely raw before take down, he finally said that he felt that I was probably as "good a candidate as any" for BCIR and I should go check it out.

How difficult is it to spend 21 days in a hospital away from all your family and friends. The summer I got my j-pouch, I spent a total of 30 days in the hospital due to complications. I got hardly any visitors and that was just accross town. I can't imagine being in another state!