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    Honeybythelake Apr 16 2022 10:44 pm

    I was looking through the RareCurate Places. Is there a way to add Mayo Clinic Jacksonville? I'd hate for people in the Southeast US to think they had to travel all the way to Minnesota.

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    sullym Feb 17 2022 11:37 am

    Hi just wondering if there is anyone on here who has had a total colectomy and total gastrectomy im 3 yrs post colectomy and 6 months post gastrectomy and finding it v hard to keep weight on would love some support pls

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    LifesaPolyp Jan 30 2022 5:06 pm

    My children’s book about fap is being published for rare disease day!

    https://imaginewellc.com/lifes-a-polyp

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    LifesaPolyp Sep 27 2021 10:38 pm

    I didn't think about FAP causing gall bladder cancer until I had my gall bladder removed this year
    https://www.lifesapolyp.com/2021/09/the-unexpected-after-surgery.html

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    LifesaPolyp Jun 16 2021 11:12 pm

    Happy birthday to Carleton Myers who turned 95 today! He has FAP and 2 ostomies. His son helped me interview him for his birthday.

    https://www.lifesapolyp.com/2021/06/turning-age-95-with-familial.html

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    Jolene Dec 27 2020 3:12 am

    I have ileostomy done 3 yrs ago and the cancer has spread to my lungs and pelvic area. I am going for a higher dose of chemo using chemo iv pump starting next week as surgery is not an option now. Has anyone on chemo iv pump now? What is the reaction to your body?

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    janhibbins107 Nov 12 2020 10:20 pm

    About 2 months ago I started to have pain, gas and feeling bloated. My pain starts out in my lower back and then comes around to my stomach and abdominal pain and then goes to my left side and up and down my back. Has anyone had this before? I am in a lot of pain and it seems to get worse when I eat. Also I have a appointment to talk to my GI doctor tomorrow afternoon on video chat and I am nervous about what she is going to say.

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    kkostrzewski75 Nov 10 2020 12:27 pm

    So I have a question about what people use for procedure prep? As expected I have yearly flex sig procedures to check on my pouch and what is left of my small intestine. The prep I have been using involves 2 duxalox tablets 2 days before the procedure and then the day before drinking a 32 oz Gatorade with 7 capfuls of Mirilax in it. Following that with once more 32 oz Gatorade with the same on the day of the procedure. And of course clear li…Read more

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    Elizabeth.chave Jul 31 2020 8:51 pm

    So i am 17(18 in September)and have fap and i just recently(a week or so) got diagnosed with thyroid cancer and i dont know how the surgery will affect me- i have until the end of August to get the sugery per the doctors orders- they said i hopefully wont have to have a drain but still

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    psycatozzy Jul 20 2020 2:45 pm

    So confused about dr. asking me what I want to do when I do not understand my test results. I am supposed to know if I want to be referred to a specialist or wait another 6 months and have another EDG done. Most dr. in past just tell me what I need to do. Any knowledge of these results. I know The four fragments not good. Any suggestions welcome. Thanks
    Microscopic Description
    Sections through A show focal enterocyte atypia suspicious for adenom…Read more

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