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 still wasn’t done 2 days after it was ordered. 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, advocate for my self and my health care. Nobody knows your body and how you feel better than you.  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 com...

 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 ab...

   UPDATED Jan 8 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 ...

 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.  Do pancreatic enzyme need a stronger warning about the damage they can do to tissue?  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, Ho...

 WARNING: This post contains medical graphic pictures. Apr 1, 2024 was a day I had been dreaming about since my Whipple Surgery ( Nov 17, 2023) and the complications that started a few days later. It was the day the Enterocutaneous Fistula stopped outputting any fluid or paste. I was secretly happy to see no discharge from the fistula, but was still skeptical to believe things were healed. I think I didn’t even tell the medical team for a day or 2. For 4 months I had spent many sleepless nights reading about how these fistulas could cause problems requiring surgery to try and fix them. I had even had a room mate for a day who was back in the hospital again because they were experiencing problems with a similar fistula for over a year and a half. I was very concerned the fistula would cause more problems than the original surgery or reduce the quality of my life. Zero output of the fistula was a huge step forward in the recovery but it was still another 3 months before the scab fel...

 UPDATED Dec 12, 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 remova...

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...