A personal story of living with Familial Adenomatous Polyposis (FAP), and life after The Whipple Surgery.
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Returning to My Happy Places, after The Whipple.
In Sept 2023, I was in the process of making the decision to have, or not have The Whipple, I asked the surgeon “ Will I be able to ride my mountain bike after The Whipple?” I love riding my mountain bike, and being out in nature, it has helped me for years deal with living with Familial Adenomatous Polyposis (FAP). The surgeon told me I should make a full recovery, and able to live an active life. After hearing this I started to make a plan of how I would get through the surgery, and recovery. I was figuring 7 days in hospital, and 3 months at home, this seemed to be the standard. I had no idea it would be such a long difficult time.
One of the first things I did, in the month that was leading up to the surgery, was buy a flag with a happy face on it. Then took this on a mountain bike trip, spending time each day saluting the flag, starting the process of focusing on a positive outcome for the surgery. I was lucky to have my family, and friends in my life. I enlisted their help to keep me in a positive mind set. When things got rough, and I was very frustrated I had to lean on them for more energy. We talked about how this had to be a positive experience, even if the worst was to come, and not to dwell on the negative. I set up a What’s App chat group so I could keep in touch with my family, and friends that couldn’t be there.
The surgery went okay they tell me. I remember the first visit I had after the surgery, a group of my friends brought in a new happy flag, and hung on the curtain around my bed. I could look at each day, and remember what my goal was, to return to a happy, and active life. With in the first week post Whipple I developed several leaks, and then a stubborn fistula, the recovery started going very poorly. I had no idea at that time I would spend a total of 140 days in the hospital, 2 separate hospital stays with a 3 week period staying at friends place, and another 60 days with a NJ feeding tube at home once I was discharged. From the start I had a series of pictures, and personal memories, I called “My Happy Places”, that I dreamed of revisiting when I had recovered, and had the strength. Early on in the recovery it seemed easy to stay positive, but as the weeks went by I would have times I really struggled to stay positive, I was frustrated that the healing was taking too long. This is when I knew I had to talk to my family, and friends, look at “ My Happy Places” pictures, listen to music, and walk as much as I could. It wasn’t easy but I found small things to get me by, and worked hard as I could to get better. I started taking notes, and pictures so I could keep track each day of how things looked, and what was going on. I would see patterns, changes, or useful information I could share with my medical team, some of which proved very helpful. Now as I look back at what happened I am not always sure how I did it, but staying positive, and focusing on getting back to see "My Happy Places" must have had something to do with it. I know I am very fortunate to have so many great people in my life, great care from the Health Care workers, and my health. There was a lot more that could have gone wrong, or changed my quality of life, I owe the Universe a big THANK YOU. Cheers
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 grade dysplasia and I had a lot of complications after. As a result of the complications I was put on TNP feeding, then transitioned t...
UPDATED Sept 3, 2025 Happy to report that what I have done over the past 12 months has helped my Ferritin and Iron levels stay stable and a slight increase. Part of the on going follow up after my Whipple Surgery is having blood work done at 3 and 6 month intervals. Blood work done in Nov 2024, a year post Whipple, showed my iron levels to be in the normal range, but the Ferritin levels had started to drop. Both my primary Doctor and dietitian recommend me increasing my daily iron intake to see if that would help raise my Ferritin level. The duodenum is removed during the Whipple, and it plays a crucial role in iron absorption, so removing of this section of the small bowel reduces the body's ability to absorb iron. Ferritin is a protein that stores iron in the body's cells and It's found in many cells, especially in the liver, spleen, and bone marrow. A low ferritin level after the Whipple is common and is often due to impaired iron absorption caused by the removal of th...
Originally posted to social media Dec 15, 2023. " Friday update. Day 28, back on full fluid diet, but only able to drink very little to start, took me all day to drink an Ensure, but wow was it good lol. One drain removed this morning, 2 still in(one active), CT scan ordered and waiting for that. The medical team hopes the CT scan may show where the fluids is coming from. Goal is to get me on solid food, off the IV TPN feeding and able to pass it through the digestive system. Still going slow and steady." Dec 14, 2023. Dec 15, 2023.
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