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    FAPulousTV Jun 22 2017 4:31 am

    Patients and physicians aren't so different (or at least in their opinion of the impact of years of polypectomies and scopes on bowel function) according to our High Risk Adenoma surveys. What are your thoughts? https://www.fapvoice.com/rarepoll-single/?poll=24&utm_content=buffer6db3c&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer

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    dlow Jun 19 2017 7:38 am

    Hi - we would love your participation in a poll to understand the various diagnoses that members of the FAPvoice community may have received. This very quick poll is open to all members of the community: patients, caregivers, medical professionals, etc.: https://www.fapvoice.com/rarepoll-single/?poll=15

    If you've already taken it, there are many other FAP-related polls in our poll center: https://www.fapvoice.com/rarepoll-listing/

    As with all …Read more

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    FAPulousTV Jun 16 2017 1:54 am

    Thanks to the amazing advocacy efforts of FAPer Kevin Myers, Michigan declared this week FAP Awareness Week (ok, it's only effective in the state of Michigan but, I think we can all celebrate regardless of location) so...Happy FAP Awareness Week! Go forth and let people know that you are (or will be) still roll'n sans colon!

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    FAPulousTV Jun 14 2017 3:27 am

    At the end of the month we're sharing the full results of the High Risk Adenoma Patient and Physician Surveys from this spring but, in the meantime, there are some highlights we found particularly interesting which we wanted to get out! Also, if you couldn't take the survey, we have a few one question polls from the survey where you can share your thoughts (like this one: https://www.fapvoice.com/rarepoll-single/?poll=16).

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    DaniCon Jun 12 2017 4:02 am

    These are my fundic gland polyps in my stomach, currently being monitored with annual scopes. I am struggling with nausea on an empty stomach, feeling uncomfortably full with the urge to be sick after a full meal. My abdomen swells up like a drum sometimes and at other times feels sore and inflamed. What is other peoples experience of symptoms, treatment and monitoring of these polyps and any advice for managing symptoms.

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    FAPulousTV Jun 8 2017 3:20 am

    This de novo FAPer needed to have her colon out at age 4. I'm so glad she had such an attentive and proactive mom and managed to get physicians to scope someone so young. When did you have your first scope? I was 22. https://www.fapvoice.com/news-meetings/

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    dlow Jun 6 2017 3:02 am

    Connect one-on-one with other members of the FAPvoice community!

    Ever wanted to communicate directly with someone on FAPvoice? Now you can from multiple places on the platform:

    1. To read your messages, or to send a new message, simply go to your profile page on FAPvoice and select the tab labeled, “Messages (BETA)”.

    2. To reply privately to a post in rareCourage, click the "burger" button (look for the three stacked lines) alongside the…Read more

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    Kevin mark Jun 6 2017 8:17 am

    francesca tubito

    Genetic Counselor

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    DaniCon May 28 2017 5:51 am

    Hi everyone
    I have lots of fundic gland polyps in my stomach. Recently I have struggled with feeling uncomfortably full and nauseous after eating a meal. It doesn't happen after small snacks. Does anyone have any suggestions for how to manage these symptoms as anti nausea meds are not working. Is this common with other FAP'ers?
    Danielle

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    FAPulousTV May 26 2017 1:05 am

    Ureteric Obstruction in Familial Adenomatous Polyposis-Associated Desmoid Disease Has anyone experienced hydronephrosis due to desmoid tumors? If so, is/was it on the left or right side? Another desmoidian brought it to my attention that he's noticed a trend of the orientation among F.A.P.ers.

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    dlow May 24 2017 8:33 am

    Hi all - we're launching the ability to message another FAPvoice member, one-on-one, in a few weeks, and would love the community's input on a few details. Would you please take our 3-minute survey? (Sorry - it's best viewed on a desktop vs. a smartphone.)
    https://www.fapvoice.com/uxsurvey

    Looking for feedback from longtime members (hi LifesaPolyp and JoyceWarrior 🙂 as well as welcoming new folks like Susie Mitterman and Jen F.

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    FAPulousTV May 17 2017 2:21 am

    I (belatedly) opened the Sunday Philly Inquirer's health section and was greeted with this story about a mother and daughter with FAP. Pretty cool! Happy (belated) Mother's Day to all of the amazing moms in the FAP community! https://www.fapvoice.com/news-meetings/

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    LifesaPolyp May 13 2017 2:52 am

    The combination of this bullying with the medical trauma I had experienced within the previous two years was too much for my childhood self.

    http://lifesapolyp.blogspot.com/2017/05/bullying-and-chronic-illness.html

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    LifesaPolyp May 13 2017 2:50 am

    Just thought this was awesome - on The Mighty there is a category for FAP!

    https://themighty.com/familial-adenomatous-polyposis/

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    LifesaPolyp May 12 2017 10:34 am

    National Voices is seeking input by May 31st about self-management from those of us with chronic illness. It sounds like an awesome project they are working on, so please help out!

    http://www.nationalvoices.org.uk/our-work/supported-self-management

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    FAPulousTV May 1 2017 9:18 am

    Now that the weather is getting warmer, do you have any dehydration tips? I like these https://www.fapvoice.com/website/interview-2-tracy-whitt-fap-patient/ from LifesaPolyp but, I could always use more!

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    debbiecamilleri Apr 29 2017 1:30 am

    HI, I have Gardner's and F.A.P. I am not the normal case of Gardners. I have a J Pouch and have been suffering from UTI'S ( urine infections) for 2 yrs now and my Urologist has discovered I have a Prolapsed Bowl which has been pressing on my bladder. SSo, I waiting to see a Colo rectal Surgeon (mine of 31yrs has just retired) to see what can be done. Has anyone else experienced a Prolapsed Bowel & what fixed it? Also, I have an Osteoma on m…Read more

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    FAPulousTV Apr 14 2017 5:13 am

    Did you share your post-colectomy experience in this quick survey? http://buff.ly/2ok2Djy

    If so, did it make you think about your GI screenings from a different light (also, what are you going to spend your $5 Amazon gift card on?)?

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    Rubyinn Apr 4 2017 10:18 am

    I've have been having problems with loose bowels ever since I had surgery on Feb 15th. I found out during my recovery that I am allergic to Imodium or meds associated with it. I've been experimenting with different foods and also have been taking a probiotic but I am still having to go to the bathroom way too many times in a day as well as if I start to move around (house chores, etc.), I have to go bathroom even more often. I am not sure i…Read more

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    Vanessa Cardoza Apr 2 2017 3:11 am

    Hi everyone! My name is Vanessa and I was diagnosed with FAP when I was 20 years old and 2 weeks after finding out my condition, I had a total colectomy and a temporary ileostomy bag. I am new to this website so please bare with me 🙂

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