current J-poucher... but miserable

[Debbiedoo611]

Hi all. I'm a current J-poucher since March 2009. I've been miserable ever since. I have severe bathroom issues and feel like I'm held captive by my toilet. I've considered having a permanant ileostomy because my quality of life is so poor. However, as I was reading this website I saw a reference to the Kpouch and BCIR..This seems like more of a logical answer for me. Do most hospitals do these surgeries or will I have to find a specialist? I currently live in Charlotte, NC and travel to Chapel HIll to see my surgeon. Thank you.

[Flemmart]

Hi...unfortunately many colorectal surgeons do not perform a kpouch or bcir. But, we have a list of surgeons, if your insurance allows, it would be great to get a consultation to see if you are a candidate. Keep in mind many surgeons and GI drs are not typically in favor of continent ostomies, they have a failure rate of 10 - 20%. The valve can "slip" (it collapses, or moves from the original position) causing issues with incontinence and interbation (inserting the catheter into the stoma to empty the pouch). I would read all the information in this forum as you can and be geared with research.

Here is the link to the list of surgeons....

http://www.ostomy.org/forum/viewtopic.php?f=8&t=996

Good luck!!! Janice

[spunkylady]

Debbiedoo.

I believe you were the lady who had the boyfriend who was not so nice. I have been thinking about you and hope you are doing well.

Debi

[DianeLeigh]

I can related to being miserable with a jpouch that just doesn't work. I delt with mine for 14 months before I opted for a perm ostomy. If you have any questions, please feel free to pm me.

[NavyJeff]

This is a question for all of you present and past J pouchers. Exactly why are you so unhappy? Do you have leakage? Is it all the time or just at night? Have you seen the surgeon to be sure that everything is anitomicaly ok? Do you watch what you eat so as not to add to or cause your problem? Perhaps eating a light supper early and some applesause at bedtime would help. Do I really know what I'm talking about?? No, only assumptions. My nephew has a J pouch and he is very insecure with it. He is 20 years old and goes to college and refuses to go to the Dr. I would like to help him and am looking for suggestions. Is there anyone out there that doen't have a problem and likes his/her J pouch? I have had a permanent Ileostomy for about 34 years.
I look forward to your replys,
JeffD

[DianeLeigh]

Jeff..... To answer your question, my JPouch was created incorrectly and, as a result, never even had the chance to work. My rectal cuff was left too long which left my pouch to high, and my pouch was created to small.

After seeking a second, then third opinion, I was givin the "option" of a few types of revisions, but the overall outlook for me of having any chance of "normal" J pouch function was bleak to say the least.

I opted for a perm ilio, which was first a permanent loop, which I then had revised to a permanent end. Even though I am now totally disconnected from my J, it is still causing me significant issues, and I am looking into having it removed and having my anus closed up very soon.

[LadyTay97]

I've had a J pouch since 2005. It didn't work practically from the beginning. I have been going to the bathroom 8-13 times a day. My periannal region is so sore that I'm always uncomfortable. Sometime in pain. There is leakage which if it could stop might help that region to heal some. After the hospital I was not given suggestions of what to eat or not eat. Even though I've mentioned this to the doctor all she said was what I was doing was all that could be done (using over the counter creams.) I've since gone to another doctor and he wants to do a permanent ileostomy because there are other issues besides these symptoms. But again there was not help with the leakage or the pain. I've been looking into the K pouch and BCIR and the doctors don't seem to be happy about that. My doctors and most of the hospitals around here do the conventional Brooke ostomy. I found a doctor/hospital in Morristown NJ (1 and 1/2 hours from me) who does this K pouch operation. Does anyone know or have heard of Dr. Rolando Rolandelli? I have an appointment with him in a few weeks but I'm trying to find out failure rates (I've heard 20% for the k pouch), etc. Anyone have any information about this? Or any other information about hospitals/doctors that do this operation. I have requested info from the Cleveland clinic. I received info from Palms in FL. I don't know if I want to travel that far though. Any help/info would be greatly appreciated. Thank you so much.

[LindaAukett UOAA Advocacy]

LadyTay - welcome to the board. Very sorry to know the reason that you are seeking information, though. When a J-pouch doesn't work it can make life miserable.

Dr Rolandelli is listed in this Forum among the docs who are known to work in this area. You will find him listed on the 5th page of the topic about Docs who do Kock Pouches - I think this link will take you directly there:
https://www.ostomy.org/forum/viewtopic. ... 6&start=60

He may be able to convert your present pouch to a Kock Pouch, but there will need to be a lot of thought given to whether your frequency is 'mechanical' (as in because of a leaky anal sphincter) or if the pouch itself is inflamed and rebellious. If you have pouchitis, it really doesn't matter which exit is used, the pouch is the problem.

You are wise to be concerned about failure rates, of course, since the valve is the trickiest and most critical part of a K-pouch or BCIR. Pouchitis does contribute to failure, of course, but it isn't the surgeon's fault. (Researchers are working hard to find a way to predict which patients are more likely to have that sort of pouch failure, so people don't go through the years of misery that many, like you, report here.)

For your perianal pain, have you tried a product called Calmoseptine? If not and you would like a sample, I have lots of sample packs that have been sent to us (since my husband is the contact for a support group). Click on the envelope at the right and send me an email.

[nicola smith]

please have a look at the posts on the link below that discuss the kind of things others have tried to manage their adjustments to a jpouch. Nothing compares with the difficulties some of you have experienced/are experiencing but there may be things you find worth trying.
http://coloncancersupport.colonclub.co ... =1&t=21187

Lady Tay, It is unforgivable that you were given no guidance on things to do to manage diet, leakage and pain.

For me, the keys were/are (1) a low residue diet, (2) Kegels and the MD Anderson bowel retraining program, and (3) calmoseptin, another compound recommended by an ET at IBD sucks, soft TP and a bio-bidet. My posts on the above mentioned thread give more details on each of these.

I hope you find the strength to give things another shot.

[nicola smith]

Is there anyone out there that doen't have a problem and likes his/her J pouch? I have had a permanent Ileostomy for about 34 years.
I look forward to your replys,
JeffD

JeffD, I have only had my jpouch for 5 weeks but so far it is going very well and I have no complaints. As my previous post indicates, I had a really good 'launch' and received lots of advice beforehand about what to do pre-op to improve changes of success,and what to do post-op about diet and pain management.

I should mention I have a long history of ulcerative colitis which can make jpouch complications more likely. To ward this off, I take a hefty dose of probiotics every day - VSL#3 or VSL#3DS.

How long has your nephew had his pouch and what kind of problems is he having?