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    LifesaPolyp Apr 19 2019 6:27 am

    If anyone is interested in subscribing and watching, I talk about living with fap and short bowel on my YouTube channel.

    https://www.youtube.com/channel/UCqXW6N2IARpKYgXE-xnWeOg

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    Ashlyn Schefano Apr 13 2019 1:17 am

    I wanted to let everyone know that I am so appreciative of this site and everyone on it. I am so happy to finally have a place (aside from my immediate family) that have people to actually know what I am going through and have gone through it to. It is nice knowing that I am not some "freak" living in a world of people that cannot relate.

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    psycatozzy Apr 12 2019 12:59 am

    Not sure what happened to my other post. Sorry if I double posted. Having thyroid issues now and want so see if anyone else with FAP has experienced this?

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    Ashlyn Schefano Apr 8 2019 6:29 pm

    So I am new here... I have known I have FAP since I was about 17. My mom has it (had a colectomy) and my grandfather passed away from it turning into cancer so we knew to make sure I was closely monitored. I am 24 now and just had my 3rd colonoscopy and first upper-endoscopy today. One the plus side I do not have any polyps in my upper track, however the large increase in growths in my colon has made it to where my doctor wants me to go ahead w…Read more

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    LifesaPolyp Apr 4 2019 5:09 pm

    It was great to meet with other FAPers and get to share our experience with this disease and our opinions in Philly this last week. I shared my experience with it all in a post in case anyone would like to hear more about it.

    https://lifesapolyp.blogspot.com/2019/04/exploration-and-rare-disease-awareness.html

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    kkostrzewski75 Mar 17 2019 2:43 am

    I have a question if anyone else experiences symptoms like this. I have had FAP for over 10 years and have had my entire colon removed and replaced with a J pouch. I have recently started having periods of days where my lower abdomen and area where my colon would be gets extremely crampy and tight. It gets better when I go to the bathroom but then starts building up again. After a couple days it goes away. I am guessing it is probably rela…Read more

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    IslandGirl Mar 7 2019 4:07 am

    This is a fantastic community and I love the plethora of resources!

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    Mnm3351 Mar 2 2019 6:52 am

    I am new here. My mother and 5 of my siblings have FAP. I am 56 with 1 child, am considering genetic testing to make sure my daughter is free from this. I have had multiple screenings, my 1st one (at age 21)found a juvenile polyp, no polyps in subsequent screenings. I always assumed since I appear to free FAP free that my daughter would be too. Now I am wondering if I have the genetic testing to be sure...... thoughts??

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    whitsully Feb 26 2019 12:14 am
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    Community Mgr. Feb 25 2019 8:25 pm

    Join the movement to get control of your healthcare data. All it takes is downloading a free app! https://hu-manity.co/download/onefapvoice

    Share a screenshot in rareCourage showing that you claimed your 31st Human Right and get a $5 Starbucks gift card (limit 1 per member)!

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    Rubyinn Feb 16 2019 2:28 pm

    I have a J-Pouch but b/c I am older and cannot take recommended meds, I experience many issues everyday so I am looking at the Pros/Cons of ostomy bag. Any information would be greatly appreciated.

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    Community Mgr. Jan 30 2019 7:22 pm

    Have you shared a picture of yourself with an ostomy in support of the #bagsoutforseven campaign? I will confess that I do not have a picture of myself baring my ostomy to share (I barely have any pictures of myself with my ostomy prior to my reversal) as I too felt ashamed of my body during that period and didn't want any documentation. There's no question that ostomies and FAP can mess with our body image but there's also no question that yo…Read more

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    Nick W. Dec 24 2018 3:21 pm

    Hey everyone. I posted my story on here a very long time ago, I was just barely 17 when I found this site after I had my colonoctomy and my j pouch surgeries. Now im nearing being 18 years old. I come on this site every now and then and all though I don’t always know much of the science stuff and long words, I do know how heading others stories gives me peace. When I first found out about my disease at 8 years old I thought I was alone and I wa…Read more

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    Debbie Camilleri Dec 21 2018 2:03 am

    I would like to invite others to a meet up. I, myself and others who have never met anyone else who has this disease, share stories, laugh, cry, Express emotions.
    This will be in Brisbane in February. I will post dates, time n place shortly.
    I am really excited to meet others who are in the same boat. Together we can make a difference to educate people about our disease.

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    Debbie Camilleri Nov 28 2018 1:35 am

    Hi, I am needing to find out is there a life expectancy for treated and untreated FAP??

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    Community Mgr. Nov 21 2018 10:02 pm

    Happy Thanksgiving/fall holiday season oneFAPvoice family! As you prepare to celebrate with your non-digital family, here are some holiday feasting tips designed specifically for FAPers to have recipe for Thanksgiving success while colonless! https://www.fapvoice.com/rcuratenew/fap-holiday-eating-advice/

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    RobinoSz_ns Nov 20 2018 7:42 am

    2014 northeastern destination x ride

    This ride is all about photographing colorectal cancer(diagnosed under the age of 50), Familial Adenomatous Polyposis(FAP) and desmoid tumor survivors for the 500UNDER50BEFORE5O & FACEiT Projects. I will also be capturing the sights along the way. The ride makes it start from Harpers Ferry, WV (one of my favorite places in the east), and will follow the Appalachian Trail to it's northernmost point in Maine.

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    RobinoSz_ns Nov 20 2018 7:32 am

    Introduction to Scientific Journal Literature

    https://www.youtube.com/watch?v=ZoYeSM0VI7U

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    RobinoSz_ns Nov 20 2018 7:28 am

    lillypad

    https://lillypad.eu/entry.php?e=57

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    RobinoSz_ns Nov 20 2018 7:27 am

    Non-Surgical Management of Attenuated and Deleterious (Classical) Familial Adenomatous Polyposis: A Long-term Surveillance Program

    The primary objective of this chart review study is to evaluate the outcomes of subjects with Attenuated Familial Adenomatous Polyposis (AFAP) and Deleterious Familial Adenomatous Polyposis (FAP) who have not undergone surgical resection of the colon. A secondary objective of this study is to compare 1) the colonoscop

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