I posted this about a week or two back in the general forums and they suggested I post here for some advice.

History: After college I decided to go in for a colonoscopy due to various symptoms blood, soft, inconsistent BMs. I found out that I had Familial Polyposis, but here's the kicker everyone in my family checked out, so essentially I am/was the index case for FAP. The doctor told me that my best option was to have a total Colectomy and J-pouch. That was the summer of 2003, everything was working out well. I had zero issues with my new psuedo-colon and life was good.

I was about to start my new job 4 years later after finishing graduate school when I had a blockage. I went into the ER for fluids and a CT scan. The next few weeks were crazy, but the final diagnosis was this: I had a desmoid tumor that had created the blockage. I had a temporary illeostomy put in to keep up my nutrition, but i still wasn't absorbing so they put me on TPN. Over the next five months I went through 4 sessions of chemo to shrink/kill the tumor. It shrank significantly over that peroid, but it wasn't gone.

Finally, I was referred to another set of soft tissue sarcoma doctors in Boston who have some experience with this. The decision was to surgically remove the remaining tumor. The good news is that the tumor is gone (I have another CT scan to verify it hasn't come back planned in a month).

Unfortunately, they were not able to recover my pouch and I now have a permanent illeostomy. I have had a hard time adjusting to the fact that I will now have an illeostomy for the rest of my life, especially at age 27.

My question is simple, do I have any other options? I spoke with my Boston doctor and he said I might inquire about another pouch, but he said the surgery would be dangerous because of the amount of scar tissue already present. So am I just giving myself false hope? or should I meet another surgeon and see what my options are? Who should I talk to?

I appreciate any help anyone can offer.

Gabe

ps-Are there any specific doctors that are very good with j or k-pouches that I should meet with? I keep seeing the group at the Cleveland Clinic so I assume they are very good.

Hi Gabe,
I'm 29 and lost my j-pouch to crohns and fistula at 28. I got a k-pouch (continent ileostomy) at the Cleveland Clinic last year and I love it!
I too hated the idea of living with a permanent ileo at such a young age. There is a lot of good information on this webboard and even by doing a google search. Its a difficult surgery, it requires a very skilled surgeon and its also a difficult thing to get used to.
I love my k-pouch though and believe it was totally worth it.

Can't answer about the scar tissue. How many abdominal surgeries have you had? Everyone is different. Even though I've had several surgeries my surgeon remarked that there weren't many adhesions. Not everybody is a lucky though. In my opinion, someone who does not do the k-pouch surgery, can't really tell you if you are a candidate.

Do some research, I'm happy to answer any specific questions you have.

--
katie

There are people who have gone from jpouches to Kock pouches. There would be many factors to consider as to whether this may be an option. Scar tissue would be one, the amount of remaining bowel would be another.I'm sure there are others I am clueless to.
Check further down in the site and you will find the topic "updated Kpouch surgeons". There are 2 in Cleveland at the clinic and a few in NY. All are excellent.(just thinking location)
The best thing to do is to make an appt for a consult. Sometimes sending copies of surgical reports ahead of the appt is helpful..depends on the doctor's procedure.
If you are unhappy...go for it...
(I did

Hey Gabe,
I'm 28 now, and have FAP. I had a desmoid right below my bellybutton (not to mention a malignant tumor in my rectum). I had chemo, and radiation. And b/c the tumor was so low in the rectum, i wasn't a candidate for a jpouch.
I was told i'd get a permanent ileostomy. And like you, wasn't content with this as my only option. ( i was 26 at the time).
I researched the kpouch, talked with my surgeon, who didn't do the surgery, but had studied with Dr. Fazio at cleveland clinic, and knew alot about it.
he straight up told me the cons as well as the pros, and gave his opinion that he wouldn't do it. But he would support my decision to have it done and would refer me to cleveland clinic.

I've had my pouch for almost 2 yrs now, and while i won't say it's all roses and unicorns, it's definitely a better option for me than the standard ileo.
i may have to get one someday, but for now, i figure a few more years without it is good.
i understand the precariousness of desmoids. they're an evil bastard of a thing. The one i had removed in my abdomen seems to have come back, as it's showing up on scans. and it's in between the incision scar, and the stoma. but it doesn't seem to be doing any damage now, and isn't growing bigger. so for now they're figuring out how to deal with it.
it's tricky, as i'm sure you know, since desmoids are known to be sorta triggered more with surgical trauma. and they always seem to grow back in the same spots.
so some care in consideration of what kind of surgery you'll have should be taken b/c as i understand it, doctors will want to limit surgery as much as possible to keep desmoids down? maybe.

either way, i am free to answer any questions you may have, but like everyone has said, just research research research. ask ask ask. and yea, definitely get some consultations with a good kpouch surgeon.