Living a full life with FAP, desmoids and surgery

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Joined: Thu Jun 26, 2014 6:10 pm

Living a full life with FAP, desmoids and surgery

Postby captaincanuck » Tue Jan 13, 2015 10:51 am


I am a young married man in my early thirties who has been living with the diagnosis of FAP for 17 years. I have had a Whipple surgery, undergone chemo for desmoid tumours and 1 month ago had a total colectomy with a permanent ileostomy.

FAP is rare. Desmoids are even more rare.

It has been difficult for me to find information about how other people have navigated these waters... i think mostly in part due to the rarity of the conditions. Lately I have found sharing my experiences via a blog helpful and I thought others in a similar situation to mine might find it helpful to read.

You can find my blog at:

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