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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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    Elizabeth.chave Jul 5 2019 2:35 pm

    So I'm 16(17 in a few months)and I have FAP and was diagnosed after my dad had stage 3 colon cancer and had to have the ileostomy surgery and has a permanent bag from it but I have polyps and will probably have to get my colon removed in the next few years so.... yeah

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    IslandGirl Jul 3 2019 11:59 pm

    Have any of you had nodules on your thyroid? I just had my first ultrasound of my thyroid and the doctor called today to tell me that they have found a few nodules on a part of my thyroid. So I'm going to be seeing an endocrinologist soon. My doctor said it was not sinister (phew!), but I'm still concerned.

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    Kendall Moore Jul 3 2019 5:51 pm

    Happy 4th.

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    Pennie Bickerstaff Jun 26 2019 2:05 am

    I am having surgery on Friday morning at Brookwood in Alabama. My colorectal surgeon said that he is going to remove the polyps in the last inch of my rectum. They are high grade pre cancer. One is very large and two others are a bit smaller along with hundreds of baby polyps. We are not for sure how deep the biggest one is. The is a possibility of injury to my female organs and bladder along with the rectal muscles. I will have to be rechecked e…Read more

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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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