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, 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, 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
UPDATED Mar 16 2026 The number of polyps / adenoma, in my remaining colon, rectum and stomach, has increased since after my Whipple Surgery , and I started taking a Proton Pump Inhibitor. The Whipple re-configures the digestive tract, and creates a new connection between the stomach and the small intestine (jejunum). Proton pump inhibitors (PPIs) are prescribed to patients after a Whipple to prevent ulcers and bleeding in the upper digestive tract . Do Proton Pump Inhibitors (PPI) cause an increase the numbers of polyps with Familial Adenomatous Polyposis , FAP ? There is a study, Journal of Yeungnam Medical Science, that seems to suggest that using a Proton Pump Inhibitors (PPIs) for over 12 months is a significant risk factor for developing advanced colon polyps. As of June 17, 2025 there are now several small Fundic Gland Polyps in my stomach, this is the 1st time I can remember or seen any word of these, and not sure if this because...
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...
I decided to try and retire this year, not sure financially this was a good decision, but mental and physical I know I have to try and I know it will help keep me healthy. If I stay healhty and active I will stay out of the hospital I hope. A trail day is helping repair and maintain a multi use ( horse back, hiking, running and mountain biking) network of trails. I live in a beautiful part of the world, the foot hills of the Canadian Rocky Mountains. There are several networks of trails and trail associations here, we are very lucky. I think my favorite trails to work on are the old classic trails in Kananaskis Country . Most of these trails haven't seen any attention in many years, so they are over grown and eroded. The trails are often in a remote wilderness area, so getting to them can often be an adventure, we hike, bike and use e bikes to get to locations. You have to be prepared to be there for several hours, with enough food, water and extra layers in case the weather chan...
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