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Did you find anything out?  What is PSD?   What happened for you to need a Whipple?  I noticed you have FAP.

I have FAP and have egd and pouchscope every year to remove the polyps that grow in my duodenum and rectal stump.  They grow every year, they get removed, more grow….

Last edited by ksr

Yes, I have an aggressive form of  FAP and I just turned 60. A PSD is a pancreas sparing duodenectomy. I needed that because of the polyp burden, size, and high grade displaysia  pathology in my duodenum.  After 16 years the Polyps have regrown in my new duodenum and are numerous and large again. IF Cleveland Clinic determines the risk is too great they likely will recommend a Whipple surgery.  I am scoped at CC 2 times a year. My sister is 50 with FAP and just had a PSD at CC this past June for the same reasons.

What age did you find out you had FAP?

What age did you start growing adenomas polyps in the duodenum?

I didn't start growing the polyps in the the rectal stump and duodenum until I was about 36.  I had my colorectal surgery when I was 29.  Found out I had FAP when I was 28 when i noticed rectal bleeding.  Currently get scoped once a year except one year it was twice when one of the polyps had changes to it.

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