A personal story of living with Familial Adenomatous Polyposis (FAP), and life after The Whipple Surgery.
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Mountain biking after Whipple Surgery.
I wasn't sure what life would be like after my Pancreaticoduodenectomy or "The Whipple" in Nov 2023, my big concern was the change in quality of life and would I be able get back on the mountain bike. The surgery it's self went really well they tell me, but on the start of the second week, when I should have been going home I developed several leaks and this was the beginning of a long difficult recovery. I started to worry that this was what my new normal would be like, but some how found the drive and energy to walk as much as I could while spending 140 days in the hospital. I kept telling my self this would help me get back to the life I wanted. Friends and family helped support me, gave me the energy I need and reminded me to keep my sense of humour.
A group of friends, family, and strangers put to together a Gofund Me campaign and bought me a Rocky Mountain Instinct Ebike, at first I wasn't sure how to take it. Did they think I wasn’t going to ever be able to ride my favourite analog bike, a Norco Sight? It turned out the Ebike was huge part of my recovery, getting me back out on some trails which helped me mentally. I was discharged on Apr 28, 2024 but still had a NJ feeding tube and wasn't able to eat or drink anything. The first few weeks home were very tough, still having pain, dealing with long periods of tube feeding that was making me nauseated and keeping me awake at night. I was still walking as much as I could and enjoying being outside in the fresh air. The Ebike arrive on May 24, 2024 and it had been a rough day, but when I saw the bike and sat on things felt better. I managed to ride it around my Tiny House and everything seemed better. I found a way to pack the feeding system up in the backpack and started to go on daily rides. At first I was afraid to leave the sight of my house, just doing laps around the yard, or the road in front of my place. Eventually I got up the courage to ride a little father away, making it down to the Elbow River, near my house, to enjoy sitting by the moving water. Things were looking up, I was seeing the light at the end of this long difficult time.
On July 4, 2024 the NJ feeding tube was finally removed, this gave me a lot more freedom, but also a new set of challenges to deal with. Learning what I could eat, how much I could stomach and keeping my energy up. I discovered eating smaller amounts more often was the way that work best for me. This new found freedom was something I had dreamed about. I still had to be reminded that I was no where near the shape I had been 8 month ago. I was down in weight 9 kgs, my strength and coordination had declined. I started riding easy trails and loving the fact I could do a ride without a lot of pain or discomfort. I may have gone into things a little too fast looking back at it now. I still can't believe I went with friends to do one of the local classic rides less than 2 weeks after having the feeding tube removed, Jumping Pound Ridge. It's a tough climb up, I took the Ebike so that helped and I decided to come back the same way I went up and skip the long ride over to the next mountain, Cox Hill, that had a very rough technical down. Riding down I soon realized I didn't have the upper body strength to do things like this, the Ebike had got me up the mountain but I would need to start working on my upper body strength. I continued riding the Ebike until late Sept, riding over 800 k in the 4 months. I decide it was time to see what I could do on the analog bike and started riding that more. It was tougher but felt good to be getting stronger. Winter arrived in mid Nov and then I switched to the fat bike, shorter rides in the winter but helped build more strength and coordination. I averaged 200 k a month over the winter.
Spring arrived and it was time to get ready to go back to work for Alberta 66 MTB. I would be doing 2 different group rides a week(an E bike on Mondays and an Analog ride Fridays) along with beginner lessons one night a week and green level guided shuttle rides ( down hill) 2 or 3 days a month. This was a lot to take on mixed with riding with friends and volunteering when I could on trail days. I decided I need a lighter analog bike because a lot of the sessions and group rides would be on cross country trails. I saw a bike I liked at Bow Cycle and a good friend knew one of the owners. John gave me a great deal on a new Norco Fluid, I was set for the season, now just had to manage my energy and food intake. Eating 8 or 9 smaller meals or snacks is hard to do when you are on the go, but I make sure I keep on top of it. I have had one set back where I over did it in the heat, got really dehydrated and run down. This lead to a trip to the ER, and an emergency CT to check on things, rule out any problems, they though I was having a small bowel obstruction. What they found or think was the problems was ileus, the small bowel had just slowed down. Things cleared after a few days but this was a wake call that I had to keep on top of eating, hydration and my electrolytes.
I have to stop and remind my self I am not the same person I was before the Whipple, I have changed mentally and physically. It's okay to slow down, rest, enjoy more of the simple pleasures in life and not feel the pressure to prove my self to anyone. I am so thankful for the medical care I received and the amazing people I have in my life, not sure I could have done it with out them.
My new Norco Fluid. loving this new bike
1st time on the new Ebike May 24, 2024
Visiting one of the favorite places in Sept 2024
July 2024, 8 months post surgery, and 10 days after NJ feeding tube was removed, maybe I should
have waited a little while before trying something like this. But happy
to say it went well.
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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