July 7, 2024 update.

Originally post to social media July 7, 2024.

"TUBELESS, and not just taking about my bike (Unit 102), but myself as well. For the first time from Nov 17, 2023, to July 4, 2024, 231 days, I don't have any tubes coming out of me, no IV, epidural, catheter, PICC, NG, drain, or NJ feeding tube😊.

The NJ Feeding tube was removed last week, and it feels great. I have been drinking a mix of protein, high calorie drinks, and eating soft foods. Each day I am trying a new food item to see how it goes with digestion. I have to take Viokace, a Pancreatic enzyme, in the pill form now. I am still not sure how many pills I need to take each time. It's hit or miss, trial and error approach. Try something to eat, take a pill, write down when I take it, and if there is any reaction or discomfort. After sometime I will see if there is a pattern to help me figure out how many pills I need. There is a chance my pancreas will work enough so I won't need to take any enzymes, that would be ideal. 🤞🙏

I am feeling better, slowly getting more energy, but have to balance my activity with my energy in take. I still have some abdominal muscle pain, tenderness, and numbness around the incision site.

Along with the biking I have been able to do, I have started stretching, doing light weights, and having random dance parties to help loosen up and strength my core. I have to say the random dance parties are my favorite. 😊

Add some music to your life, things are always better with tunes."

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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