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Just diagnosed with FAP/Gardner's Syndrome

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  • Just diagnosed with FAP/Gardner's Syndrome

    My anxiety is at an all time high. I was ready to have stem cell treatment for my IC then had a colonoscopy done that showed I have 100 polyps and was told FAP, first in my family to have this genetic mutation. Now that is out the window.


    I have sever dysplasia in my rectum and was told it can't stay. I might wake up with a jpouch or if there are desmoid tumors then I am stuck with a permanent bag after my colon is removed. I am not able to deal with this at all. If I don't have my colon removed I will be dead in 2 years. The daily struggle with IC is so bad as is I can't handle it being worse.

    anyone on here have their colon removed? Anyone have FAP? Maybe your bladder is better or worse after the removal?

    FAP also causes other polyps and tumors to form. They found a small 1cm brain tumor starting, might never grow but the news is just worse after worse the past 2 wees this has been going on.
    Last edited by vanessavy; 10-09-2011, 05:27 PM. Reason: adding
    http://www.vanessaic.wordpress.com Read my blog about my journey into RAW food, not taking meds or horrible instillations and having stem cell treatment done for IC that I have had forever.

  • #2
    I'm so sorry you are having so many difficulties.

    Sending healing wishes your way,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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