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    justin depina Jun 22 2019 4:57 am

    Has anyone had experience with having small bowel resection done? My Doctor Found a nodule on my ampulla in my lower Duodenum.Looking for advice and what to expect.

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    BostonMahk Jun 22 2019 4:20 am

    FAP related family deaths traced and catalogued back to 1905. 35 years ago I had a sub-total colectomy. 25 yrs ago was the whole J pouch procedure. Now potential Whipple and J pouch Re-do both may be necessary.

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    Pennie Bickerstaff Jun 21 2019 8:59 pm

    I would like to hear from those of you who have a ileostomy. What is your pros and cons about this surgery? Any advice would be great.

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    Pennie Bickerstaff Jun 13 2019 11:38 pm

    Unfortunately my biopsy came back high pre cancer for FAP. They are going to remove it in a few weeks. It is at the very bottom of my rectum. This is going to hurt. Hopefully I will not have to have a illeostomy.

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    Pennie Bickerstaff Jun 12 2019 1:00 pm

    How many living FAP patients are there? What is everyone age as well?

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    Pennie Bickerstaff Jun 12 2019 12:58 pm

    I had the surgery to remove my rectum and a j-pouch. The doctors didn’t remove enough of my rectum so now I have polyps in the lower part and they are near my female organs. I am going to have to have surgery to remove them. My big question is can they remove the rest of my rectum so I won’t have to have a permanent illeostmy? I am seeing my first local surgeon today. If he doesn’t sound positive then I will go to the Mayo Clinic in Florida…Read more

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    wsh_caps43 Jun 4 2019 8:14 pm

    Does anyone with FAP also have Mast Cell Activation Syndrome and/or POTS? I have had symptoms of both for the past few years (without knowing it) and they have suddenly become worse in the past few months. I am still in the process of getting diagnosed and was just wondering...
    Thanks!

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    IslandGirl Jun 1 2019 7:01 pm

    Hi..so 8 years ago I had a total protocolectomy with j-pouch. A few weeks ago I had to have my rectum removed and now have a temporary illeostomy. I'm finding it hard to eat and gain weight. I have lost over 15 lbs in 2 weeks and I was already very tiny to begin with. I hate the way I look and feel. Any tips? I tried drinking Ensure but they make me so sick. I find that I can't eat a lot at once and do not have much of an appetite. Thanks!

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    catherine95 May 28 2019 4:23 pm

    Hi..my daughter with FAP is three weeks out from the 1st of the two step procedure . She currently has a stoma and in three months will go back for the reversal. My concerns is that a couple times she has had problems with cramping and "bubbly stomach". One time it was in the middle of the night and the fellow doc on call told her to go to the ER. She didn't go and just bared with it and used a heating pad and it past. When she called the d…Read more

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    samanthajjjj May 21 2019 7:11 pm

    Hi all, I’m looking for some advice regarding a recent change in my FAP progress. Not really sure where to turn... I had a subtotal colectomy back in 2013 and have recently had a sigmoidoscopy to check on how my rectal area and remainding section to large intestine are doing. They’ve found 50+ polyps up to 5mm in size. Does anybody know how many polyps would cause further surgery? Or am I just overthinking things? Thanks in advance x

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    polypsaplenty May 2 2019 1:53 am

    So random question. I've got FAP and I'm about 8 years out from my surgeries (Jpouch), and I haven't had many complications thankfully. I get annual surveillance w/ upper & lower scopes & thyroid ultrasound. I don't have anything in the duodenem or pouch yet, nor do I have any concern in my thyroid yet, but I am carpeted with polyps in my stomach. My GI doc offered to not have me get annual surveillance, but he said he can keep it…Read more

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    LifesaPolyp Apr 29 2019 10:58 pm

    Introducing 2 new designs to Life's a Polyp Shop making 7 total designs for a variety of products. All proceeds donated to NORD Familial Adenomatous Polyposis Rare Disease Research Fund
    http://www.cafepress.com/lifesapolyp

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    dmarie Apr 28 2019 3:03 pm

    Hi! I just joined the community today even though I do not have an FAP diagnosis. Genetic testing has been negative for me and two other family members who both survived early colon cancers. My situation is different however. A year and a half ago, I had 31 tiny polyps removed. Since then, I’ve been scoped every 3-6 months and have now had a total of 96 polyps removed. They have all been 3-5mm adenomas with a few sessile serrated polyps. All…Read more

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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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