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    Nick W. Jan 15 2020 6:10 am

    It’s been probably about a year since my last comment on here. Hello all, when I first found this site I was 15 years old, turning 16 in a month and having my complete colectomy in about 2 weeks. I was terrified. And I commented on this site acting strong and curious in what was to come. Honestly I was terrified, and after all my surgeries were done I was depressed. About a year ago I commented on here again being almost 18 I felt enough time h…Read more

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    cjpjrr3 Dec 22 2019 3:28 am

    I had j pouch surgery along with complete hysterectomy including both ovaries 14 months ago. I have a polyps that has engulfed the end of the ampulla in the duodenum, removing it will also involve removing a little of the ampulla and putting in temporary stints. I can't do the procedure now because I recently was put on blood thinners due to a 90 % blockage in an artery .my question is diet. To keep my bowels under control I do best eating eve…Read more

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    Lily Dec 20 2019 9:58 pm

    I’m having my colon removed, a little of my rectum, the jpouch, and a temporary ostomy bag. I’m worried about people bullying me I mean I am in middle school

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    Lily Dec 17 2019 12:41 am

    So I have a question. Because of FAP I have frequent stomach aches from anything really and I’m going to get a total colectomy in the next month or so will that make my stomach aches better worse or will it stay the same???

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    Lily Dec 5 2019 12:11 am

    Hey I just joined bc I went to the doctor today after having a colonoscopy and endoscopy last Tuesday and they found a whole bunch of polyps in my large intestine and some on my stomach. Today I went for biopsy results and they said they were Precancerous and that I had FAP I’m 12 btw I didn’t know i had this until last Tuesday bc I’m adopted I have to do a Total Colectomy but good news is they said there’s not a 100% chance I will need the bag

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    Cece Nov 24 2019 4:48 am

    I was just diagnosed 3 weeks ago and I am 49 years old..I have to remove my Colon,Rectum,Gallbladder and complete Hysterectomy within 2 months and I will be doing BCIR it's safest for me at Olympic Hospital in Los Angeles with Dr Pouya-benyamini..I am very terrified.
    I wish everyone all the Strenght and Love.🙋‍♀️❤🌹🌹💪👊👏👏👏
    Cece

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    Carolyn Duvall Nov 21 2019 2:58 pm

    I was diagnosed with FAP at 18 in 1995. I had a total colectomy with jpouch. I have many symptoms that go along with Gardner's Syndrome. I have osteomas and cysts. I have also had thyroid cancer as a result of FAP. I recently had an MRI to check the growth of my osteomas and a small tubercular sellae meningioma was found. I am currently waiting for a referral to a neurosurgeon. Has anyone else with FAP been diagnosed with a meningioma?

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    asweet Nov 5 2019 6:37 pm

    I was diagnosed with FAP at 13. I was adopted so I had no idea this would happen to me until I had a very scary episode. I decided to have my colon removed when i was 22 due to noticing my body changing and tumors forming. I had the j pouch for 3 years. Now recently at 25, on October 25th I was told my j pouch was not able to be saved due to my surgery from a tumor being removed in September 23 ever since I been fighting a infection because the j…Read more

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    Elizabeth.chave Oct 29 2019 1:21 pm

    I'm 17 and yesterday I had my "yearly"colonoscopy(I haven't went since 2017) and I obviously had polyps and I had some changes since 2017,I have polyps in my duodenum(like my dad) and I also have something that might be polyps in my stomach(also like my dad). It had me stressing out before it and yeah it didnt really turn out as well as it could have. I am about to switch from the children's side of the hospital to the actual like hospital s…Read more

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    Nortonrene Oct 28 2019 7:17 am

    The company that has made my Kock Pouch Ileostomy catheters for the past 38 years (yes, thirty eight years) has gone out of business and neither the VA nor can I find a replacement. I have used a 24 inch long, 31 French 2 slot catheter. Any help out there? I kind of need them and that's like saying the Titanic got slightly wet.Lol

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