Okay, question / input: Crohn's patients and J or K Pouches?

[BrianH]

I am 30 years old and have had crohn's since age 12. At age 23, my local GI doc somehow talked me in to having a colostomy. This was at the very same time in which I was approved to go through with a stem cell transplant trial for my crohn's disease at Northwestern hospital in Chicago. It's a long story but the short version: My stem cell transplant was completed 5 years ago and I my crohn's is more or less 'cured'. I say 'cured' because I'm only five years out. I have been off all medication and my scopes only show some scars of where my crohn's once was. My local surgeons refuse to do a K Pouch because they are not sold that my stem cell transplant worked and I'm still technically diagnosed with crohn's. It's all totally silly to me, but until I can perform the K Pouch procedure myself, I'm at their mercy. So since my SCT, the only thing to show for my severe crohn's is this stupid bag, which I hate to this day despite having it done six years ago. Not until recently have I fired up my hunt for a Doctor who will consider doing a K Pouch on a crohn's patient. This came after hearing a nurse tell me that her dad has crohn's and just had a K Pouch done by a facility in California. So now I'm on the hunt to get some answers / input / feedback etc.

My deal? I'm a 30 year old male who has some smarts, decent looking, a former athlete blah blah blah and I totally shut down my 'fun' life (playing sports, dating, sex life) once I had this ostomy done six years ago. It's been a total mental burden. Physically I am fine, except for a plastic bag hanging from my stomach that fills up with feces. (that's how I see it and I know most of you disagree). I have wanted a K Pouch for years but have been denied. Now it seems that some Docs are open to performing the procedure, however, I'm not sure what criteria I have to meet?? (looking for help on this one). So if any of you are crohn's patients and have had the J - K Pouch done or know of somebody who has, please share some info with me. I'm very curious. If I could get accepted for this procedure, I would basically have my normal life back.

Thanks!

[BrianH]

I do apologize, as I just found out that a J Pouch is totally different than a Kock Pouch.

The Kock Pouch sounds like a more desirable form of a diversion.

[Flemmart]

Hi..Dr. Launer in La Jolla has done the Kpouch for some of his patients that were diagnosed with crohns and they are thriving. But, it depends on where the crohns was located and your history.

http://www.advancedsurgical-sd.com/

I have had my kpouch for over 29 years - by a surgeon who also trained Dr. Launer (and both were trained by Dr. Kock).

Best to you!!!

[bbcopper]

Hey Brian,

I was reading your post and had a couple of questions.

You said you have a colostomy and not an Ileostomy correct?

If you have a colostomy how much of your colon is left?

I ask, because a j or k pouch are usually done when someone has had their colon removed and the pouch is made from the small intestine. A K pouch is done when someone either doesnt have sphincter (sp) control (due to radiation or other reasons) and can not control when they can go to the bathroom.

If you have most of your colon, then a resection sounds more appropriate. Just want to clarify your situation.

I have a jpouch and I know others who have jpouchs and kpouches. Unless you do not have bowel control for whatever reason, I would think that a jpouch would be the procedure that you would be looking at.

I say this because with a jpouch your internal plumbing is reconnected and you will return to going to the bathroom as you were always meant to.

With a K pouch you will still have a "flush" stoma and you will have to use a catheter through the stoma to empty your pouch several times a day.

So, I was wondering is there something about your situation that leaves you with a Kpouch your only option or what were the reasons you were leaning towards it?

As far as the doctors are concerned I have two points I would like to make:

1. For either procedure (there are only a few that do Kpouches) do your research and only seek out those surgeons who are known for their work and have a lot of experience with the surgeries.

2. You are your best "advocate". The hospitals and insurance companies look at these surgeries as "elective procedures". As far as I know, most surgeons "frown upon" these surgeries for crohns patients because of the probabilities that the disease may return in the pouch. But, ultimately it is YOUR decision. The worst case scenario is that you are back where you started. So, I would start demanding service from these doctors, plead your case, write letters and do not stop until they are so sick of you that they would rather cut you open then answer one more call, open one more letter and hear your voice one more time! Its your life, you decide what quality of life is best for you .

Most doctors expect that whatever they say is "gold" and that we as mere patients will just except what they say and put our tails between our legs and walk away. Don't give up and do not take no for an aswer, you have many avenues to put pressure on these doctors.

good luck

Brian

[Cookcreek]

I had a BCIR which is similar to the K-pouch. I didn't have a good time with the k it lasted 3 months and I was never well. I had the BCIR over 1o years and was very active. I rode and showed horses in showjumping. If you have not you may want to contact Palms of Pasenda in St. Pete, Fl. Susan Kay is who I worked with and she is great person to for information even if they can't help you.

[susan f]

bbcopper - I just wanted to offer a word of caution on this:

But, ultimately it is YOUR decision.

First of all, the physician, especially if it one that you have researched well and are confident in their abilities, should be the one telling you what you get to decide between. Just because I might want to have a particular surgery doesn't mean the physician agrees that it is a good idea in my case. Yes, I know my own body best. But the physician has seen many bodies, not just mine.

The worst case scenario is that you are back where you started.

Not true. Multiple surgeries mean multiple times you run the risk of surgical complications. Having an unsuccessful j-pouch or k-pouch could mean that you may wind up with short bowel syndrome because you have lost so much bowel. I have had 10+ surgeries because of my j-pouch. That's a lot of pain, suffering, time off of work and risk. And I didn't even have CD, I was diagnosed with UC and was considered a great candidate for the j-pouch surgery. I "just" had chronic pouchitis.

So, I would start demanding service from these doctors, plead your case, write letters and do not stop until they are so sick of you that they would rather cut you open then answer one more call, open one more letter and hear your voice one more time! Its your life, you decide what quality of life is best for you.

Their other option is to "fire" you as a patient, and may well do so if they don't believe that what you are demanding is a medically realistic option.

I know that the internet has made us much more knowledgeable consumers of medical services, but the physician is still the one with the years of schooling and hands on experience. Our ability to do research can help us partner with the physician, make more informed decisions and ask better questions. But in the end it is their reputation and their ethics that you are challenging by making demands and not listening to their experience.

[Paully's5.0]

I do apologize, as I just found out that a J Pouch is totally different than a Kock Pouch.

The Kock Pouch sounds like a more desirable form of a diversion.

Why would you say that? A j pouch makes your plumbing operate in a completely normal manner. A-la "Sit, squeeze, wipe" action. No need to carry anything with you, and in my case I can do my business in less then two minutes from unzip to zip.

As for the option of a jpouch or koch pouch, it will be a hard sell if in fact you your CD diagnosis is solid despite your steam cell treatment (to new), unfortunately the success rate of a jpouch is pretty small with those who have CD. Many on the board here who had complications with their j-pouches were re-diagnosed with CD.

If it is something you really really want, don't stop looking for a doc who would try it on you, but I doubt t would be someone local. Probably would have to look towards Cleveland Clinic/Mayo types of doctors.

[Flemmart]

While there are pros and cons to all ostomy types, a kpouch is a great option for those a. who lost their rectum from disease and b. who need to control when or how often they can use the toilet.

There is no leakage with a kpouch, no butt burn, many positive aspects - and an easy transition for those with a brooke ileostomy.

Keep searching for a surgeon who will only do the procedure if you are a candidate and has done a j or k pouch - I understand the devastation of crohns and understand the external bag is not always pleasant - even if it saved your life. best to you...

[Lynne]

I had a brooke Ileostomy for 13 years before changing it to a Kock pouch in 1990. I have had absolutely no problems with it. I'd be glad to answer any questions you might have.