Apr 17, 2024 update.

Originally posted on social media Apr 17, 2024.

"April 17th, 2024 is the 5 month Whipple Surgery anniversary, and marks 131 days, and counting, in hospital. I was home in Jan for 22 days, and a few hours on day passes has been my only break from the hospital.

Currently working on getting the small bowel working and digesting liquid nutrition via the nasojejunal(NJ) feeding tube. TPN IV nutrition is being scaled back as the NJ feeding is increased. The fistula(leak) from my stomach to the insecion is slowly healing. To by pass the leak the feeding tube goes through the stomach past the leak into my jejunum, part of the small bowel. Nothing to eat or drink for awhile longer because of the leak in the stomach.

There have been some rough days in the last few weeks where frustration and negative energy got to me. Progress seemed to be slowing down and my dream of getting home earlier was crushed.

With the support and help from family, friends, and the health care team I was able to get back to a more positive way of dealing with things.

I love the great people in my life. I am so thankful for all that you do for me, you are the reason I can do this"

Apr 4, 2024.

Comments

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...

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...

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.

The FAP - Whipple Report

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