Hi,
I am facing a difficult decision and you are about the only people that I can talk to about this. My k pouch is a happy and healthy pouch but my valve pulled part way out of the pouch when I had a peri-stomal hernia. I get them often. Even though my doc put on a living collar to keep it better in place the hernia made the opening too lax and my pouch twisted up and pushed it out.
That said, I can live most of the time with the problem. I am usually continent, don't have much pain and can intubate (with some difficulty some days and with a lot others).
I have a pouchogram done annually to check the progression of it and it was stable for 2yrs but now seems to have pulled out a bit more.
I may be able to have it fixed in the not too distant future but am not sure if I should. For me, every surgery means 5 or 6 more afterwards for complications, usually hernias, prolapses, ileus, occlusions etc...I am not a good healer, I have D'Eller's-Danlos that does not let my body glue it self back together like others do and mean tons of complications.
I can live like I am as long as I don't degenerate more but there is no garentee that it will remain stable (it is sticking it's tongue out at me lately:mild prolapse).
My French surgeon is getting older and is over 65 and so is my k pouch doc...soon they may no longer be practicing and I will be stuck living in a country that does not know how to fix k pouches.
What do I do? I can not seem to make a decision. I know that the first step is to have the pouchogram done to check out the valve so I will do it next week. Then what?
Sharon

I wish you could come here! Is retiring can he help you find someone else? Does your insurance in this case cover you going elsewhere?

@Sharon:

If you want, you can travel to Akerhus University Hospital in Norway. In this hospital works a very experienced surgeon who has much experience with the kock-pouch. He is also leading the clinical trials of OstomyCure.

Best Regards
Martin

Thanks Martin, but I cannot afford the trip as it stands and no Vanessa, my insurance does not cover out of country surgeries (other than in the European union and only with permission)...so I cannot go State-side for it. Martin is right though, the best place is to go to the source or back to my original surgeon but...for now I still have to have the test and I haven't even booked it yet...(denial is not a river in Egypt! )...scared to death of the results.
Sharon

Sharon,

Sorry to hear you are having problems again. I have a pouch scope this Thursday and possible surgery on Friday to replace the valve and move the stoma to a new site. My husband of 2 years is very supportive however he told me yesterday that since he thinks I am a perfectionist, that maybe I should just learn to live with the stoma the way it is (air, gas and some stool escape) and be happy that things work as well as they do. I'm going to give it another shot, I am like you and could never have an end ileo, I'm much too vain, I know that there are so many people worse off than us, but we do what we can to have a certain quality of life.

I do want want to thank you for being such a supportor of the Kpouch and now Vanessa for supporting the BCIR without the two of you and the others on this site, people would never know these procedures are available. I am a big BCIR advocate myself and wish more doctors would feel comfortable with these procedure.

We just moved rom GA to NC, I saw a general surgeon for a hernia problem, he told me he doesn't even recommend a jpouch, that he goes advises people to go directly to an outside appliance, what a shame!!

AF,
Thanks for your support...I know that those who have never had a k pouch cannot understand us...we fight daily for something that we feel gives us the best possible quality of life and is in itself a major compromise...I love my k pouch, I just hate that these hernias are ruining it...I may just have found a compromise solution...my French surgeon may look into re-placing my valve into my pouch through laporoscopy and reinforcing it with mesh + sutures...lets see if it can be done...if anyone can, it is him!
Tests and apt next week.
Sharon

I don't get the chance to post much, but I read the forums almost daily. Sending positive vibes your way Sharon.

By the way, I'm still thinking should I try a Kpouch if the Australian surgeon doing them is still doing them. Would have to have a guarantee that they'll convert the existing jpouch to a Kpouch, or I just want a perm ileo. I really really want to get a BCIR, but that's a pipe dream for me living in Aussie land.

Back to you. Your amazing positivity on these forums is so uplifting. I really hope your surgeon is able to repair those hernias. Sounds promising.

Ad

Adroen,
A j pouch, if it is not a sick pouch, can be easily converted to a k and most surgeons prefer it (saves on intestine and prevents short gut syndrom)...that said, it has to be a healthy pouch...Which begs to ask why you need to get rid of it...if it is for cuffitis or a sphincter problem then they can, if it is for pouchitits then I do not know...as for the difference between the K pouch and the BCIR, there is only 1 and that is in the BCIR they use a 'living collar' or wrap a piece of live intestine around the part of the valve inside the pouch to reinforce it and prevent it from pulling out (prolapse)...not that it doesn't happen anyway (mine did)...I have a k pouch with the living collar but I had a peri-stomal hernia that loosened the muscle around the opening in the pouch and allowed the valve to pull out anyway.
There is no reason that a K pouch surgeon cannot do the same thing if he feels that it is needed. There is also no reason to worry about having a k pouch over a BCIR...They have exactly the same success rate.
Sharon

Hey Sharon,

It's good to hear your confidence about the Kpouch in relation to the BCIR.

My main problem was the extreme pain that I was experiencing while I had the Jpouch in operation. I had UC that started right at the base of the rectum(Ulcerative Proctitis), and it was untreatable/unmanagable by medications before the jpouch operation. I also had at least one anal fissure, that I'd had for almost 16 years before any of the UC stuff started flaring. Weird thing is, no surgeon/gi that's looked up there has seen an anal fissure, even though i've had the same bleeding from that old anal fissure. One surgeon thought maybe it had split open so much, it was unrecognisable as an anal fissure now.

Anyhow, since having the jpouch disconnected, sure enough the extreme pain from having harsh small bowel contents spewing across open flesh has gone. The mucous/blood that still exits daily doesn't cause the pain. The remaining UC in the rectal cuff is still causing me a lot of discomfort though, and I'm using steroid supps to manage that, but I don't want to be doing that forever. The pouch itself isn't free from physcial problems though either, and I was also told the pouch would need to be cut off on the j end, making the pouch around 10-15% or so smaller to fix it. They had no ideas/answers to fixing the pain problem though. So yeah, as long as I don't need to use my anus, and all of that can be taken out of the equation, I think i'd have a pretty good chance at a Kpouch. The pouch itself didn't show signs of being inflamed/ulcerated for example.

Going to seriously consider this again now.

Ad

And once again good luck with the upcoming appointments/surgery if you decide to go ahead with it.

Ad,
You sound like a good candidate (I am not a doctor, this is just my opinion) from what you say...my problem was similar...it was the sphincter/rectum that was the biggest problem although I had constant colon problems (non specific IBD...Cramping, blood, diaraha...2 dozen or move BMs a day)...so when I presented my case to my surgeon, he accepted me without too much trouble (although I don't think that he will remember it that way )
I was his ideal candidate, 13th in his test series, young, strong and determined to get my life back...neither of us regret our decision 30+yrs later even if I have had a rough time of it the last 10+yrs...
J pouches are great if your natural exit functions well but for those of us who have exit problems (am I being discrete enough?) the k pouch is a fantastic alternative...I have rarely met anyone who has had a funtioning k pouch who has regretted it. It gives you your life back. No joke...so look around and see if the Australian doc is still doing it and if not, PM and I may have an idea for you.
Sharon

Hey Sharon,

Just a question. How much small bowel do they need to create the valve? When they disconnected my jpouch, the surgeon wouldn't cut the small bowel for the end ileo just above the pouch, but insisted it had to be cut around 15cm from the pouch. So even if I had a perm ileo done, i'd need to reclaim that small bowel back. Now I'm wondering if that would be enough to create the valve of a Kpouch/BCIR. At the moment it's just sitting in there doing nothing! lol Well, actually it's adding extra mucous discharge(which I can't blame it for since it's what it's designed to do) which has to exit still the old fashioned way, along with the mucous the jpouch creates, and the blood the rectum is losing. Ok i'm getting off track...; Still haven't checked with the surgeon that was doing the Kpouch surgeries in Australia yet, but if they aren't i'll take you up on the PM offer to see what your idea is. You haven't found a way to travel back in time have you? That would be cool. Or into the future, equally cool.

Ad

I really wish more surgeons would study Kpouch/BCIR surgery. Improve upon it...etc.

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

Don't worry about the length of small bowel needed (although they take 17cms +/- you shold have jsut enough)and generally they can use the old pouch if it is healthy...find out if the surgeon is still doing them and why if not...then PM me and I will help you.
Sharon