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    asweet Nov 5 2019 6:37 pm

    I was diagnosed with FAP at 13. I was adopted so I had no idea this would happen to me until I had a very scary episode. I decided to have my colon removed when i was 22 due to noticing my body changing and tumors forming. I had the j pouch for 3 years. Now recently at 25, on October 25th I was told my j pouch was not able to be saved due to my surgery from a tumor being removed in September 23 ever since I been fighting a infection because the j…Read more

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    Elizabeth.chave Oct 29 2019 1:21 pm

    I'm 17 and yesterday I had my "yearly"colonoscopy(I haven't went since 2017) and I obviously had polyps and I had some changes since 2017,I have polyps in my duodenum(like my dad) and I also have something that might be polyps in my stomach(also like my dad). It had me stressing out before it and yeah it didnt really turn out as well as it could have. I am about to switch from the children's side of the hospital to the actual like hospital s…Read more

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    Nortonrene Oct 28 2019 7:17 am

    The company that has made my Kock Pouch Ileostomy catheters for the past 38 years (yes, thirty eight years) has gone out of business and neither the VA nor can I find a replacement. I have used a 24 inch long, 31 French 2 slot catheter. Any help out there? I kind of need them and that's like saying the Titanic got slightly wet.Lol

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    Ashley Reed Oct 5 2019 6:36 pm

    Has anyone else have to get their entire stomach removed due to FAP?

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    Ashley Reed Oct 5 2019 6:07 pm

    I was diagnosed with FAP when I was 15. My mother had it. So growing up I knew about ileostomy and j pouches. But unfortunately my onset was alot more extreme than hers. At 16 I lost my entire colon and gallbladder. Since then FAP took my entire stomach, all of my large intestines, half of my esophagus, 3/4ths of my small intestines. Now facing the side effects and other complications to that. Other than my brother who was diagnosed after me an…Read more

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    millerkayleej97 Sep 18 2019 7:40 pm

    New to this. I follow a few pages on Facebook and that’s really all the support I have besides my family and medical team...a close friend of mine showed me this page.. I would love to talk with people who have fap as well ..

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    Brian Worth Sep 11 2019 4:38 am

    Hey, i’ve Been diagnosed for around 5 years now. I haven’t actually dealt with or even truly grieved having this disease. Is there anyone in San Francisco that knows of support groups for people who are living with this condition.

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    Pennie Bickerstaff Aug 7 2019 2:01 am

    This Thursday 8/8/19 I will be having my first scope of my rectum to see if there are any new polyps. I am 5 weeks out from my rectal surgery. To be honest my bottom is still hurting and feels like a raw piece of meat. Have any of you had rectal surgery in the last 1/2 inch of your rectum? If so do you remember how long it took to recover from it? I would like to hear any advice or thoughts please.

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    Pennie Bickerstaff Jul 11 2019 3:08 am

    Have any of you been told that FAP has scared your eyes? The doctor said that most times just after birth they can see the spots of FAP, most spots leave the eyes within a few weeks. My spots did not leave. They don't know what the outcome can be. Just wondering.

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    IslandGirl Jul 9 2019 5:51 am

    I wanted to get some opinions/advice on the matter of timing as to when to have your child tested for FAP. I have Classic FAP which means there is a 50/50 chance that my daughter will have FAP. We were encouraged to wait and have her tested around age 10. However, my husband and I have been battling with the decision. Part of us wonder if we would feel better knowing now (of course hoping she does NOT have FAP) instead of anxiously waiting. But p…Read more

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