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Just diagnosed with FAP/Gardner's Syndrome

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

    Sending healing wishes your way,

    Leave a comment:

  • vanessavy
    started a topic Just diagnosed with FAP/Gardner's Syndrome

    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, 04:27 PM. Reason: adding