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    kerryleelloyd Jan 29 2018 7:39 pm

    Where to begin? My husband is 34 years old and was experiencing significant stomach discomfort . after an upper and lower scope it was clear that his stomach was covered in polyps (but the Dr called it "gastric folds") and 10 benign polyps were removed from his colon. We were sent to another hospital and the the Dr there did another type of biopsy. He explained that there are hundreds of polyps covering the lining of his stomach and two in his …Read more

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    Community Mgr. Jan 22 2018 4:41 pm

    Some "gut-busting" humor for the beginning of your week.

    Any thoughts on colon/cancer humor? Personally, I've come to appreciate the inside cancer jokes shared between fellow cancer-ers and the awkwardness they can yield when thrown around in the general public.

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    Teresa Stewart Jan 14 2018 10:45 pm

    who here deals with pain all day everyday? I am on pain killers but don't want to be I want an actual solution but doctors can't give one to me. I go to the bathroom A LOT because I get cramping pain and only way to make it go away is to go to the bathroom. what do you guys deal with and how do you deal?

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    Pennie Bickerstaff Jan 7 2018 3:05 am

    Is anyone in our group taking sulendac for polyp growth?

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    Erin Coolican Dickman Jan 2 2018 6:45 pm

    Hi Everyone, my name is Erin and my daughter Lily is about to undergo genetic testing for FAP. We found out when she was about 3 that her biological father has FAP. He found out at 45. It was a surprise to him because he was adopted and it was not included in his family history. Lily is going to be 10 in January. This past year she had a cyst removed from her chest that came back from biopsy as an epidermoid cyst. She has quite a few others that …Read more

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    Community Mgr. Jan 2 2018 2:01 pm

    Happy New Year everyone! Do you have any FAP or non-FAP-related goals or plans for the coming year? I'm thinking about striving for better hydration management and adding to the passport stamps garnered by my jpouch (and hoping for improved health for myself and my fellow FAPers).

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    Ashleyshows Dec 23 2017 6:15 pm

    Hey you guys, Callie is finally home!! She is having amazing output. I have a few questions if you have any input would be amazing!!!!!
    1st. She has a little hole next to her stoma should I be worried about it? We’ve called the dr he said it sometimes happens just wondering if anyone has had experience with that?
    2nd. She is just not feeling it! Like just down in the dumps. We’ve baked cookies talked about presents and santa. And she is jus…Read more

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    Community Mgr. shared Community Mgr.'s post Dec 18 2017 12:49 pm

    Had a fantastic weekend presenting and finally matching the voice to the text of fellow FAPVoice member, JoyceWarrior at the Desmoid Tumor Research Foundation Annual Patient Meeting. Have you ever been to a medical conference?

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    Ashleyshows Dec 15 2017 6:29 pm

    Hey guys!!!! So Callie (step daughter) is doing great!!!! Went for some walks and has done a complete 360!!!!!! She is on a liquid diet and no NG tube!!!!!! Only problem is her bag leaks a lot. Like it gets unstuck to her skin shortly after putting bag on. Any tips and how to get the bag to stick to the skin better!? Thank you to all of the ones who helped out with answering questions and thinking about us!!!

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    Ashleyshows Dec 13 2017 1:13 pm

    Hey guys, if you’ve had your large intestine removed how long did you throw up after words??? Also how long did it take for your intestine to wake up!?!? My daughter had hers done last Wednesday and she is still throwing up and intestines aren’t working yet.

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    Ashleyshows Dec 12 2017 10:58 pm

    My 9 year old step daught had her large intestine removed on Wednesday. And we have had a pretty big set back. She can’t keep anything down we’ve had horrible care at the hospital she is at, no one knew how to operate an NG tube. She threw up over her NG tube for 4 days. They had to go in and fix the hole to her stoma bag and now they are wanting to close up her stoma. And just go ahead and retach it all back to her j pouch. My concern is lea…Read more

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    Nick W. Dec 12 2017 6:44 am

    I’m 16, from Alberta Canada, and I have F.A.P. I first found out when I was 8 I believe, had scopes done once a year so the doctors could watch the polyps. Did that for 8 years until April 28th, 2017. That was the day I had my colon removed, and 2 months later had the reversal surgery on the Jpouch. I feel like over the last 8 months I have gotten stronger, i have gained back the 25 pounds I lost and more, I have worked my way back to the physi…Read more

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    RobinoSz shared Nadia Bodkin's post Dec 7 2017 4:54 am

    WHERE IS EVERYONE FROM? We are all from different parts of the world coming together because we all share similar rare journeys. I'm from New Jersey, where are you from?

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    RobinoSz Dec 7 2017 4:52 am

    COLON CANCER: Catching it Early

    https://s-media-cache-ak0.pinimg.com/736x/c8/77/fc/c877fc5543bb1956242726b787f2f939.jpg

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    RobinoSz shared RobinoSz's post Dec 7 2017 4:38 am

    During the course of genome studies in a rural community in the South Indian state of Karnataka, DNA-based investigations and counselling for familial adenomatous polyposis (FAP) were requested via the community physician. The proposita died in 1940 and FAP had been clinically diagnosed in 2 of her 5 children, both deceased. DNA samples from 2 affected individuals in the third generation were screened for mutations in the APC gene, and a frame-sh…Read more

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    jrkbird Nov 21 2017 7:49 pm

    Curious to know if anyone in the greater Houston Metro area has any advice for getting into MD Anderson without an active cancer diagnosis? My husband is FAP, has had JPouch, Whipple, and several other surgeries over the last ten years. My 16 yr old step-daughter is FAP Gene positive - she is at least 4th gen FAP, but no symptoms as of yet. We have tried and tried to get them into MDA to see the FAP specialists there, but because they don't have…Read more

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    polypsaplenty Nov 21 2017 6:39 pm

    So, I've been problem free after my take down five years ago. I used to have problems with bowel obstructions when I was on the colostomy, but nothing since the take down. A few days ago, I had severe intestinal pain that seemed like a blockage. I stopped eating and drinking, but the pain persisted, so I went in. It turns out it wasn't a blockage but was pancreatitis. Have any of you folks dealt with that and do you know if there's any re…Read more

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    Community Mgr. Nov 20 2017 3:25 pm

    Hey everyone! With Thanksgiving right around the corner, I know food is on the mind. Here's a holiday feast "digest" to help you have an enjoyable (and healthy) holiday! https://www.fapvoice.com/rcuratenew/fap-holiday-eating-advice/

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    Community Mgr. Oct 24 2017 1:48 pm

    Mission accomplished! Happy to report that we have such a wonderful and dedicated individual pushing the bounds of our knowledge about FAP.

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    john roberts shared Community Mgr.'s post Oct 21 2017 3:50 pm

    Thank you oneFAPvoicers for revealing the power of the rare community at NORD’s Patient Summit. Check out the poster you powered https://www.fapvoice.com/rcuratenew/revealing-power-rare-disease-community-state-art-collaborative-trustworthy-digital-education-software/

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