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myh gene

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I have tested positive for a newly tested genetic disorder(discovered

about one year ago) predisposintg me to the likelihood of develping

colon cancer. I have had 8-12 (some fairly large & up to ? 2cm)

polyps removed on three occasions over the last eight years an am now

40 yrs old. My GI and the MAYO GI are suggesting that I have all or

most of my colon removed as a preventative measure. This is similar

to the Familial Polyposis disorder in which that too is the

recommendation except that I don't grow nearly as many polyps. The

other suggestion is to simply be screened annually with a colonoscopy

(which I hate the prep for) but this may miss some polyps and flat

cancers as well and since the polyps grow quickly the concern is that

they may become cancerous before they are caught. I am very uneasy

about having the removal since I feel that the quality of my

lifestyle would change dramaticly and with a partial I would still

have to have the last six inches of colon screened annually anyway.

What is it like to live with out a colon, do you claim disability

status, are you able to be just as active as before, what diet

changes would occur.........Help!

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