The FAP - Whipple Report

 I went into the Whipple Surgery , Nov 17, 2023, with the belief that I would be home in 7 days and recovered in 3 months. The surgery it’s self went okay they tell me, but 4 days later I developed a pancreaticojejunostomy (PJ) leak, followed by hepaticojejunostomy (HJ) leak and there were delays in acting on these complications. It got so bad 2 of my close friends had to come in and talk to the medical team to find out why a CT scan ordered on Nov 24,2023 wasn’t done until Nov 26, 2023. By the time the CT scan was done things had gotten much worst and it was the start of a very long recovery . This when I started to notice it was very important for me to pay attention and advocate for my self and my health care. Nobody knows your body and how you feel better than your own self. Unfortunately I didn’t start making notes or taking pictures until I was discharged, Jan 5, 2024, after 50 days in the hospital. I was sent home with 2 drains and a very active leak that was coming out of a...

 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...

 WARNING , this post contains Medical Graphic Pictures below.  I can’t help wondering if Creon, a pancreatic enzyme, caused extra damage to internal tissue when it got into a gastrojejunostomy (GJ) stomach leak, then a enterocutaneous fistula ? I had the Whipple Surgery in Nov 2023, then a few days post surgery developed a pancreaticojejunostomy (PJ) leak, followed by hepaticojejunostomy (HJ) leak, gastrojejunostomy (GJ), and a stubborn fistula. The gastrojejunostomy (GJ), the new connection between the stomach, and small bowel, didn’t show up on any CT scans, and wasn’t truly discovered till Mar 2024.  The reason I ask the above question is: I was discharged from the hospital in early Jan 2024, I still had fluid/ paste leaking out the fistula located in the middle of my incision. When I was discharged it seemed that the leak, and fistula were healing. Jan 6, 2024, Home Care Nurse noted: “ There are 2 small opening in the incision”. On Jan 18, 2024 I saw the medica...

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 enlist...

 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...

  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 ...

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 Enterocutaneou...

 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 on 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 like to do, with...

 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...