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Fap Study - Possible 1st Drug To Treat Fap

Posted by ZaliBee, on Mon Jul 21, 2014 12:24 pm

Anyone that has FAP already knows that they don't have any drugs that are made to actually treat what ails us.   Soon, there might be.  I came across a study that is recruiting in a few States now, and will spread to Canada, Germany, Netherlands, and Spain.!fap-clinical-trial/c1rcw  (main site) (States/Countries holding trials)

Reply by alliejmw2, on Sun Oct 26, 2014 2:39 am

wow this is the first time i have heard of this.  i have to read the article.  you are the first person I have come across that has fap as I do.  if you ever want to talk about what you have gone through with the disease i am here.  i was diagnosed at 9 months old and am in medical journals because they dr. that invented the scope they now use for colonoscopies was my gastro and because he was the first gastro to preform an upper and lower scoping on a baby.  I am assumming you were growing to many polyps and now you have a bag?  do you have a colostomy or an iliostomy (SP).  I have and ilio...and it has been such a pain that i barely leave the house.

well anyway thanks for posting the link to the article and if you ever want to chat feel free to emailme here.


Reply by three, on Sun Oct 26, 2014 3:33 pm

You are not alone Allie — there are several people on this site who have FAP.  My daughter who has an ileostomy was diagnosed 8 years ago when she was 16 (her symptoms first showed when she was 13).

Reply by alliejmw2, on Mon Oct 27, 2014 2:42 pm

wow was she a teenager when had to have her ostomy placed?  I can't imagine how that would be.  I am having a hard enough time and I got it in my early thirties.  I have suffered so much with this illness but at least I don't have to get the lower scoping anymore...the prep is horrible!  LOL.  I still have to get the upper done which I am a few years late for.  That may be why I am having trouble eating sitting up.  I have never had a poykp in my stomach or anywhere near there thank God.

how does your daughter handle being so young with a bag?  Im sure she deals better then I do lol.

Reply by three, on Mon Oct 27, 2014 7:30 pm
alliejmw2 wrote:

How does your daughter handle being so young with a bag?

When she was 16, she told me she'd never leave the house again if she had to get an ostomy instead of a J-pouch. The first question she asked the nurse upon awakning in the ICU after her operation was "Did he give me a J-pouch?" — she was so happy when the answer was "Yes"; however, within a week or so the J-pouch failed, and she had an emergency surgery to remove it and place an ileostomy. For many years life was difficult for her, but now she lives it fully and seems happy.

Reply by alliejmw2, on Mon Oct 27, 2014 7:35 pm

I can totally understand that as I still have trouble looking at it when I change it and I am 39.  My ostomy nurse had me name it to make it seem like it is a part of me but that didnt help for a very long long time.  I am just now able to almost do the whole change myself because it has always been such an ordeal and I had to change it every 2 days.

I had the j-pouch done and it failed but my surgeon refused to disconnect it even though I wasn't able to eat anything without getting sick and I was losing drastic emounts of weight.  He kept it in there even when he did disconnect in case I wanted to try it again.  NO WAY.  So part of the surgery he is going to do is taking the poich out.  I say good riddance!!!  I am never doing that again.  I was on tpn at home at night and everything.  It was a total mess.

Reply by ZaliBee, on Fri Nov 14, 2014 1:24 am

I was so happy to get my Ileo.  Even though my father had FAP, he never warned any of us so it took forever for them to figure out what was wrong with me.  I hadn't left the house for any length of time in years and I was severely anemic from the internal bleeds.

Having my wonderful bag and not being tied to the toilet 33 times a day is Nirvana (laugh).


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