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
The Pancreaticoduodenectomy or "The Whipple" , Nov 2023, went okay they tell me, but after I developed a pancreaticojejunostomy (PJ) leak, followed by hepaticojejunostomy (HJ) leak, gastrojejunostomy (GJ), and a stubborn fistula. The resulting complications , leaks, and fistula did so much extra damage to my body, and abdominal muscles, I lost most of my core strength, and flexibility. I was very discourage and worried my quality of life was going to change more because of the complications, than from the changes to my body from the surgery. I told my friends if I can walk, and eat everything else will be a bonus, I just wanted to get out of the hospital, and get on with my “new normal” life. I still have a golf ball size scar in the middle of my incision, from the fistula, the tissue is sunk in, and much thinner the the surrounding tissue. I am concerned about future problems, like hernias, but live a very active life so have to balance getting stronger, enjoying what I li...
On the 45th eve of my dad’s passing, I was reading some hand written notes by my mother. Talking to dad on one of his last days. I was struck by a few lines that stated dad was upset that on one of the last time I was to see him I had a very blank look, and wasn’t showing any emotion. But inside I was crying and no idea why I didn’t show it. I have lived with this guilt I guess from that day. We did get to visit one last time and he told me he was proud of me, I told him I would never forget him. He was funny, kind, and a gentle soul, always wanting to help those around him. We were close growing up, but somewhere along the way I started to rebel and pretend I didn’t like to hang out with him doing chores around the yard, but honestly these were my favourite times. He had a habit of making up songs, one was called ‘Scott of the Arctic”, he was singing it one day and for some reason I told him I hated that song and never want to hear it again. I think I wanted to go play with...
Jan 29, 2025 double track fat bike ride, exploring in K country AB. Beautiful spring like temps. 1 st time on these trails, can't wait to go back and ride more. The days leading up to this adventure had been very emotional. It was a year ago, Jan 28, 2024 that I was readmitted to the hospital after complications from the Whipple Surgery . I had no idea when I went to ER that it would be the start of a 90 day Hospital stay. What a difference a year can make, this ride helped get me out of the funk I was in. I love riding my bike. Things were seeming to be improving, the leaks and enterocutaneous fistula I had seemed to healing, and I was starting to eat more to get my strength back. On Jan18, 2024 I was prescribed Creon, a pancreatic enzyme, to help with digestion. After taking the Creon for a few days, things started to go poorly. I had strange feeling in my stomach, and the fistula went from a small pencil size hole, to a golf ball size, with a large piece of “slough”, tissue ha...
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