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Sharing medical information about Familial Adenomatous Polyposis, the Whipple, and complications that followed.

 After my Pancreaticoduodenectomy, the Whipple Surgery, and the complications that followed, I started to wonder if there any lessons to be learned from what happened? I made a plan to gather all the medical reports / notes, and share them. Is this medical information valuable to medical staff, students, researchers, universities, and/or hospital administrators? Would a patient find this information useful? What is the best way to get this information out there so it maybe used to help others?

What I learned personally from this ordeal was that it’s important to advocate for your self, make notes, take pictures, ask questions, and read the medical reports you can access.

Some of the questions I have, and wondering if there is anyone doing research on are:

How common, after the Whipple Surgery, is it for all 3 major connections, pancreaticojejunostomy (PJ), hepaticojejunostomy (HJ), and gastrojejunostomy (GJ) to fail, and begin to leak?

How common is it for a Enterocutaneous Fistula to form?

Can Creon caused extra damage to internal tissue if it got into a gastrojejunostomy (stomach) leak, then a Enterocutaneous Fistula that had formed because of the leak?

There was a report of some of the internal stitches used that were suppose to dissolve but were still there, and removed when seen in the Enterocutaneous Fistula months later, could this have caused some of the complications?

The number of polyps / adenoma, in my remaining colon, and rectum, has increased since after my Whipple Surgery, and I started taking a Proton Pump Inhibitor. Do Proton Pump Inhibitors (PPI) cause an increase the numbers of polyps with ,  Familial Adenomatous Polyposis, FAP?

A little of my story: I have lived with Familial Adenomatous Polyposis (FAP) for 45 years. I had a previous colectomy in March 1980, and have been undergoing regular follow up Endoscopy, and Colonoscopy since that time. Biopsies results from the Endoscopy, July 2023, showed low-grade dysplasia/adenoma
 ( some of the cells look abnormal) in the duodenum. Also there were numerous small polyps, and an extensive large flat adenoma. Aug 2023, after receiving the biopsies results, and talking to my GI doctor he explained he wasn’t confident he can remove the existing polyps/flat adenoma in the duodenum because of the location, the number of them, and scar tissue that is present making it more difficult. I was sent to see a surgeon for a second opinion, and to go over options. Both doctors suggesting the Whipple Surgery, to remove the duodenum, and the cancer risk. The Whipple Surgery, Nov 2023, went okay they tell me, but after I developed a pancreaticojejunostomy (PJ) leak, followed by a hepaticojejunostomy (HJ) leak, a gastrojejunostomy (GJ) leak, and a stubborn fistula. As a result of all the complications I spent 50 days in hospital following the surgery, then home for 3 weeks, and readmitted in Jan 2042 for an additional 90 days. Discharged in late Apr 2024, and home with a NJ feeding tube till early July 2024. More detail about the surgery and complications maybe seen here.

If you know anyone that can use this information for research, teaching/learning, or patient benefit please contact me, I am open to discussing the possibilities of using this medical information to help others. Cheers

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