Did anyone have a Jpouch due to fap?

Yes, I have a J-pouch for FAP. My surgery was completed in two stages - March & June, 1986. My brother & sister have both had J-pouches for FAP completed in the mid-90s in one surgery - how barbaric! My nephew (sister's son) also had it for FAP. My father had FAP, but had an ileo. Talk about bad genes.

Not many FAP/J-pouches out there.

I'm the first one to get it in my family. We're worried and not sure when and how to test our daughters 15 and 13 yrs. old.

Had step 1 6/16 and will have takedown next week.

I also have FAP, am first in my family. Step 1 last January and step 2 in April, am doing great now. Who's your surgeon? I had Dr. Weiser at MSKCC, he's terrific. Good luck on your takedown, is a much easier surgery though than step 1 (I walked a mile's worth of laps the next morning). Highly recommend a bidet/washlet, especially early on!

It's worth asking your doctor about testing. I am not a doctor myself but as I understand these things you can do genetic testing at any age - it's just bloodwork, and your genes don't change. What they told me when my family was getting tested was that since I have the mutation, they can look for the exact same mutation in my family, so (I think) it's a pretty clear cut test.

As far as scopes, I believe FAP patients start having them around puberty at the latest until they get the colon taken out but again, I think the genetic testing happens first.

My doctor is DR. Feingold at New York-Presbeterian hospital, he has been great, now I need to find a geneticist. How long after takedown did you go back to work?

good morning guys
I don't have Fap so i looked it up on google I see it is something serious and dont mean to make light of it, but the first thing that came up was the urban dictionary for the word fap. sorry to laugh, but being 2 days out till stage one surgery I sure needed the laugh.

Once again not laughing at ya'll gust surprised at the search results

@snookums try Familial Adenomatous Polyposis .

@Ed1721 I was in sort of a weird boat because I was taking time off from grad school to get the surgeries done - so I spent much longer working from home simply because I didn't really have a work to come back to until my leave ended. That said, I was doing some light work-related stuff within a few days, went dancing I think on the 3ish week mark.

I had genetic testing done at the MSKCC genetics clinic with Dr. Offit. If your surgeon works with FAP patients, he will likely know where to send you within the NYP system too.

Before you have your children tested, you need to have the Genetic Test (blood). Let them find your mutation, then your children's (if they have it) can be found rather easily.

Just as an FYI, all mutations aren't detectable. So, don't be surprised if they cannot find yours, yet.

To answer your original question, yes, I have a J Pouch due to having Gardners Syndrome. 6 years and counting.

I goto the Mayo Clinic here in Jacksonville....all you need to find is a Genetic Counselor, tell them you want the Genetic Test to try and detect either an APC or MYH Mutation for FAP/Gardner's Syndrome and they should be able to help you out.

It's painless and takes about 8 weeks to get the results. Yes, they found mine.........APC Muatation.

I have FAP, just got diagnosed in Feb, had the first surgery in May, got bloodclots right before my takedown. I'll find out today when the takedown will be scheduled now...fun.

Has anyone had cysts in their thyroid...since that is something to look at next with getting cancer? I have 2, having to go to an Endogolist (however you spell that) I'm so sick and tierd of being sick and tierd!

I had the genetic blood test done and it confirmed that i had FAP, i have an alteration in a copy of my APC gene which confirms my doctors diagnosis of FAP or attenuated FAP, i am the only member of my family who has been diagnosed, although my sister has had a colonoscopy and it showed no signs of any polyps and she will go back in 3 years for another 1. I am 5 weeks this friday post op from stage 1 of 2 for my j pouch surgery. Both our children will have to have the blood tests done as my consultant told me that i should have had my bowel removed when i was in my 20's, i am 36 now. My dad died from bowel cancer in 1983, but he was never tested for any genetic condition, so we think that he must have been the carrier and it was passed to me if he was tested or went to the doctors earlier then maybe he could still be alive today.

Craig, I'd suggest that your sister go have the Genetic Blood test done. Just because her scopes appear "clean" doesn't mean she doesn't have it and the blood test is alot less anguish. Since they have found your mutation, it is rather easy to try and find hers.

All you have to do is give the folks a copy of your test results and then have her do her test, if she has FAP/AFAP it will be in the same codon range where your mutation is at.

Hope that is helpful. Really the genetic test is a whole lot easier than doing follow up colonoscopies every how ever long........especially since they found your mutation.

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Posted Sep 2, 12:20 PM Hide Post
I have FAP, just got diagnosed in Feb, had the first surgery in May, got bloodclots right before my takedown. I'll find out today when the takedown will be scheduled now...fun.

Has anyone had cysts in their thyroid...since that is something to look at next with getting cancer? I have 2, having to go to an Endogolist (however you spell that) I'm so sick and tierd of being sick and tierd!

Actually the thyroid is a place where we must watch for further manifestations of FAP (cysts/nodules/cancer and such). Your going to go see an Endorcinologist, right?

I go tomorrow for my Bi Annual Scopes/MRI and Ultrasounds of Thryoid and Liver at Mayo JAX.

I am going to see the Endorcinologist in a few weeks, I have found that I have 2 cysts, one is a simple one and one is a complex...kinda scared.

Hey I have FAP.. I was one of the first to get jpouch in 86. My father died from FAP, me, my sister and two half brothers had the surgery. I am JUST NOW finding out about getting regular scopes. I was told in the day it fap would never come back... You guys I have a knot on the bottom of my throat ( I begged my dr for years to look at my thyroid and she wouldnt even check blood work!!!! I did get a scope a few weeks back. My polyps in my colon stayed flat but still matured. The dr took a biopsy in my bile duct and found some polyps. They were also flat so he wouldnt have got them but he read to check there. Does this meen they will turn? See NOT A SINGLE DR UNTIL NOW HAS EVEN TALKED TO ME ABOUT FAP IN 25 YEARS. I am so scared. He is going to rescope me becuase the severe pain in my abdomen. I cry alot now... all the time to be honest. I thought I had noting to worry about now I just want to live. PLEASE PEOPLE tell me what all I am supposed to be having done so I can check it all. I am not going to let it get me.

i have a j-pouch due to fap.had my colon and rectum taken out in 2000 when i was 20.