The FAP - Whipple Report

Can the way you think influence your health? It must have an effect on your health, they say there is science behind it to prove it, I believe it does help to think positive. I have noticed living with Familial Adenomatous Polyposis (FAP) , and having follow up scopes every 3, 6, or 9 months effects a person, you have a feeling of not being in control of your future, or what it may hold for you. I guess I kind of knew it all these past 45 years, but found some ways to deal with it, some good and some not so good. I made decisions a lot of the time to do things that made me happy, sacrificed some opportunities, I made lots of mistakes, or just ran away from situations.   My current therapist helped me start to realize what I have been doing and how to deal with a future I feel I can’t control. She pointed out that I had made it to this point by doing just what I talked about above. I can’t control what will happen, but I can make choices, and decisions that help me, and get me ove...

 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 enl...

 A short summary of the Whipple Surgery, Pancreaticoduodenectomy , the complications, and 140 day Hospital stay that followed. Most of the information is a direct copy from my Hospital discharge report (spelling mistakes have not been corrected). I have added some other information, those notes are in italics. Warning medically graphic picture links included. A more complete summary, with pictures maybe seen here : https://fap-whipple-report.blogspot.com/2025/01/a-summary-of-key-events-for-whipple_10.html I had the Whipple Surgery in Nov 2023, it seemed to go well, 4 hrs of less in the OR. Normal as it could be the 1st few days, mild pain, walking as often as I could. Nov 24, 2023 Nurses note “ Abdomen +++ distended and firm.” “ Patient now complaining of 10/10 pain and laying in bed in fetal position holding abdomen.” “ Pending CT, form completed, IV access available.” Nov 26,2023 Nurses note “ CT abdomen pelvis ordered on Friday. Still not done on Sunday. Action: I spoke t...

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...

 After my  Pancreaticoduodenectomy, the Whipple Surgery , and the complications that followed, I started to wonder if there any lessons to be learned from what happened? I made a plan to gather all the medical reports / notes, and share them. Is this medical information valuable to medical staff, students, researchers, universities, and/or hospital administrators? Would a patient find this information useful? What is the best way to get this information out there so it maybe used to help others? What I learned personally from this ordeal was that it’s important to advocate for your self, make notes, take pictures, ask questions, and read the medical reports you can access. Some of the questions I have, and wondering if there is anyone doing research on are: How common, after the Whipple Surgery, is it for all 3 major connections, pancreaticojejunostomy (PJ), hepaticojejunostomy (HJ), and gastrojejunostomy (GJ) to fail, and begin to leak? How common is it for a Enterocutaneo...

 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...

 Last week I wanted to see how I was doing physical. Could I do a ride up Hwy 66, passed the winter gate? I had done it many times in the past, but I was nervous this time, and I was going alone. It was a nice mild spring like day, in the middle of an Alberta January. I wasn't sure what bike to take, so had my analogy skinny tire, and fat tire bikes in my van. I set out on the skinny tires but there was enough snow on the climb to make it a tough ride, so turned back, and swapped it for the fat tire bike. It was slow going on the studded fat tires, but so peaceful. I got to the top of the climb, had a quick rest, and as expected the other side of the pass was bare pavement. Not fun to ride pavement on studded fat tires. So I paused, had a bite to eat, and contemplated going home. A year ago I was so weak I had a hard time walking up, and down stairs, the Whipple Surgery recovery was going very poorly at that time. This is one of the adventures I dreamed of doing again on those rou...

 I am trying to recall what it was like to find out I had Familial Adenomatous Polyposis (FAP) . I think I was 13 or 14, so that would be around 1978. I do remember feeling shock, very scared, and numb when they told me. I started to mentally, and social withdraw from things. If memories serves me correct, somewhere around the time they told me I had FAP there was a parade in my home town, celebrating The Apple Blossom Festival, I didn’t want to go. I wanted to go down stairs, be alone, and build something out of a bunch of scrap wood we had in the basement. I wanted to escape, pretend there was nothing wrong with me. If I didn’t talk about FAP, then it wasn’t real. I built a stand for my croquet set. It was a master piece, not really, but I loved it lol. I was very confused, over whelmed with emotions, and for some reason I guess I was embarrassed to have FAP. The last thing an insecure teen like me wanted was anything that made me feel different, or stand out in a crowd. Over the...

 Living with Familial Adenomatous Polyposis (FAP) I am starting to realize I have a lot of Health Care Workers to thank. From back in the late 70’s, right up to the current day, and into the future. Some I remember well to this day, like the original surgeon who did my Colectomy back in March, 1980, he seemed to live at the hospital. To the surgical team that took care of my Pancreaticoduodenectomy, The Whipple, in Nov 2023, and the complications that followed, I owe these Doctors a big Thank You. But it’s more than that, there have been a number of Gastroenterologists that have followed me on a regular bases, from 3, 6 or 12 month intervals, using their skills checking for, and removing polyps. I can’t say enough about the Nurses that are always there to take care of me, most times I have had more contact with them than any other person on the team, and there are several I will never forget how they went above, and beyond taking care of me. They are all wonderful caring individual...

 Originally post on social media Nov 17, 2024. Nov 17, 2024 marks the 1 year Whipple Surgery anniversary, or " Whippleversary", as it's known as. I feel fortunate, and thankful to be able to share how it is now after a full year. I feel like one of the very lucky ones so far. I am still struggling with my strength, fitness, and can't use my core like I use to yet, but that hopefully will improve. Eating is going well, but sticking to the same medication, diet, and small more frequent snacks/meals 9 or 10 times a day. I have to watch my iron (Ferritin), and vitamin D intake, those started to change in the last blood work. The mental healing, and change caught me off guard. I go from feeling, guilty, glad, sad, and mad(at myself) all in one day. It's so confusing, and frustrating to experience the mixed feelings, but it's part of the healing they say. There are times anxiety, and a touch of depression hit me, and I feel over whelmed with simple th...

 Originally posted on social media Sept 8, 2024. "I got to visit another one of my "Happy Places" . It maybe my favorite of all the places that I was dreaming of visiting again after the Whipple Surgery. I also hit the 800km mark on the ebike that was gifted to me by family and friends to help get me back on the trails. I received the ebike on May 24th, I still remember the first time a saw the bike and sat on it. It made my day, it has made my summer. A big thank you for the bike that has made it possible to visit my Happy Places. 🙂 Recovery is a balance between the physical and mental healing. Getting to do something you love, seeing places that hold a special place in your life, helps with the healing. 🙏 I love the people, bikes, and the places in my life. Cheers."  

 Originally posted to social media Aug 17, 2024. "9 month Whippleversary, living Day by Day. Things have been going surprisingly good, I had no idea things would go like this. Eating 7 or 8 small meals / snacks a day, blood work looks good, but need to put on 10 or 12lbs. Energy is fluctuating, and strength is still low . Sense of humor is healthy, positive attitude is strong, and desire for adventures is increasing. 😜 Only taking 2 prescriptions, Viokace ( Pancreatic Enzymes) and Pantoprazole (Proton Pump Inhibitor) , reduces stomach acid so the acid doesn't damage the updated digestive tract. No daily pain or nasuea medication. 👍 Slowly feeling like I am getting my life back and adjusting to the "new normal". At times I forget what happened the last 9 months, and get a slap in the face reminder when I over do things . I still struggle with some tenderness, numbness, and  occasional sharp pain around the old fistula site. They tell me this area is s...

 Originally posted to social media July 24, 2024. "Sunday July 21st ride details. I left home with the dream of doing a long ride on some trails near home. Leaving the parking lot I felt like a million bucks, strong, confident, and full of energy. I felt unbelievable good, and decide I was going to see how far I could go on the ebike using the lowest power setting. I made it almost 12 k, with 450m of elevation of the 19 k ride, 678m total when I hit the wall. It was getting hot and I had 2 more climbs plan, Boundary and Snagmore. I realized I was running out of energy and just need to get back to the van. So I upped the power setting, blasted up Boundary and down the other side and bailed on Snagmore. I got back home and realized I may have over done it lol. I did a small recovery ride on Monday morning, but had to pay for my Sunday effort. Felt run down, and an achy body for 2 days after. Valuable lessons learned from this ride. I am not back to my pre Whipple Surge...

Originally posted to social media July 15, 2024. "This video is dedicated to an amazing group of people who gifted me a new Rocky Mountain Instinct e-bike, and the staff of Unit 102 at the Foothills Medical Centre in Calgary. The bike I named Unit 102 in honor of those who took care of me after my Whipple Surgery and the complications that followed. Without your care I don't think I would be riding my bike on trails like this.😊 To the group of people that gifted me the e -bike, family, friends, and people who I am not sure I have met yet or seen in years, THANK YOU from the bottom of my heart. You have no idea how your gift has touched me. It has allowed me to get out, ride, and start to mentally heal from a long rough recovery.❤️ The trail is Jumping Pound, part of a local epic alpine ride in K Country. The view is one the places I would close my eyes and visualize when things got really tough. I spent countless hours thinking about all the places I wanted ...

 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,...