Skip to main content

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

Comments

Post a Comment

Popular posts from this blog

Vitamins, minerals and energy.

 UPDATED Mar, 2026. Happy to say blood work looks great, Ferritin, Iron, Vit D and Vit A are all back up into the normal range. I had been living a very active life since I was in my late 30’s. I started road biking , and then mountain biking and loved it. Mountain biking became my to go to exercise, and I loved peddling up the longest hills I could find . I took part in many races, single and multi day events, never really too win but to see what I was capable of doing, to see new wilderness areas and meet good people. Living with  Familial Adenomatous Polyposis (FAP) gave me a reason to take care of myself and keep pushing myself, I figured if I was able to ride a bike as much as I did there wasn’t anything wrong with me. In July 2023 polyps in my duodenum started to show signs  of change, and a large flat adenoma was un able to be removed, so I decided to have the Whipple Surgery in Nov 2023. The surgery went okay, biopsies of the large adenoma showed high gr...
6 comments
Read more

The importance of advocating for your self.

 I went into the Whipple Surgery , Nov 17, 2023, with the belief that I would be home in 7 days and recovered in 3 months. The surgery it’s self went okay they tell me, but 4 days later I developed a pancreaticojejunostomy (PJ) leak , followed by hepaticojejunostomy (HJ) leak and there were delays in acting on these complications. It got so bad 2 of my close friends had to come in and talk to the medical team to find out why a CT scan ordered on Nov 24, 2023 still wasn’t done 2 days after it was ordered. By the time the CT scan was done things had gotten much worst and it was the start of a very long recovery . This when I started to notice it was very important for me to pay attention, advocate for my self and my health care. Nobody knows your body and how you feel better than you.  Unfortunately I didn’t start making notes or taking pictures until I was discharged, Jan 5, 2024, after 50 days in the hospital. I was sent home with 2 drains and a very active leak that was com...
2 comments
Read more

Dec 5, 2023 update.

 Originally posted to social media on Dec 5, 2023. "Day 19th, post Whipple Surgery. Things are going along smoothly, no great ups and downs, just some what of a even ride. Last week I had my first CT scan , and it showed a few pockets of fluid. Drains and meds were engaged to help treat these. On this past weekend, bloating, and pain started to return, even with 3 drains still drawing off fluid, pressure was growing. The medical team decided to send me for another CT scan. It showed another big pocket of fluid. Monday a new drain was installed to help. It drew off 450ml of fluid before I left the procedure room. Today was more of a spa day. Thank you @maureentowns for the fancy nails"   Spa day Dec 5, 2023.   Dec 5, 2023.
Post a Comment
Read more