A personal story of living with Familial Adenomatous Polyposis (FAP), and life after The Whipple Surgery.
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Sharing info about my experience with my nasojejunal (NJ) feeding tube.
I had the Whipple Surgery in Nov 2023, then a few days post surgery, Nov 26, 2023 the 1st anastomotic leak was detected, a pancreaticojejunostomy (PJ) leak, followed by hepaticojejunostomy (HJ), and a enterocutaneous fistula started to form. The gastrojejunostomy (GJ) leak, a new connection between the stomach, and small bowel, wasn’t truly discovered till Mar 15, 2024. The leaks exited my body through the fistula that formed in the surgical incision, just above my belly button. To help me heal I was put on TPN feeding, then eventually transitioned to a nasojejunal (NJ) feeding tube.
When the NJ feeding tube was installed I was on TPN feeding, and the plan was transition to the NJ feeding so I could go home. We first tried to mix Creon, a pancreatic enzyme, in water so it could be injected into the feeding tube, I didn’t feel comfortable taking Creon by mouth. I was concerned the Creon I had taken by mouth in early Jan 2024 had leaked out of the gastrojejunostomy (GJ) leak, and got into the fistula, then caused extra tissue damage sending me back to the Hospital for 90 days. The Creon wouldn’t dissolve or mix with water so wasn’t easy to inject into the NJ feeding tube so we stopped trying to use it. I had few days where I had a lot of pain, bloating, and problems digesting the feed fluid, and had to slow down then stop the NJ feeding. Eventually the dietitian, and pharmacist change me to Viokace, another type of pancreatic enzyme. Viokace comes in a pill form, and could be crushed into a powder, and mixed with water, then easily injected in to the NJ feeding tube. This really helped with the problems I had been experiencing, I was able to increase the NJ feed fluid, and transition off the TNP, then go home to finish healing and recover.
It was trial and error to see what would work best, this is what I came up with. Step 1: Crush 20 Viokace pills (total), then soak 4 crushed pills in 20ml of water. Step 2: Shake and pour 7.5 IsoSource Tetra Paks into feed bag. Daily intake:,1875 ml, 127.5 g protein, 2812.5 calories. Step 3: Start up and prime the Kangaroo pump.( I would let it run 30 ml of feed fluid into the NJ tube before adding the Viokace/ water mixture) Step 4: Inject the Viokace ( 4 crushed pills in 20ml of water), and water mixture into the NJ feed tube. I would do it as a 2 part injection,1/2 the Viokace/water mixture and then 15 minutes later the other 1/2. Trying to spread out the supply of Viokace, seemed to help with digestion. Injections are done 5 times in a 15 hr feed cycle at 5 pm, 8 pm, 11pm, 2 am and 5 am.
The feed fluid & Viokace would leave a strange taste in my mouth, even though they didn’t touch my taste buds, and made me feel nauseous, so I took Gravol to help deal with it. Warming up the feed fluid slightly, using a heating pad, helped with the nausea, and I slept on a pillow wedge to keep my upper body slight elevated.
I am very thankful to have the medical care that allowed me to return home and recover in my own place. I won't soon forget the lessons I have learned, and think I will savour the simple pleasures of eating a meal the old fashion way for the rest of my life 🙂
Whipple Surgery Nov 17, 2023. Nov 26, 2023 1st anastomotic leak detected. pancreaticojejunostomy (PJ) leak, followed by hepaticojejunostomy (HJ) Jan 5, 2024 Discharged from Hospital Jan 28, 2024 Readmitted to Hospital. Mar 15, 2024 anastomotic leak detected, gastrojejunostomy (GJ), Apr 4, 2024 insertion of silastic feeding tube. Jul 4, 2025 Feeding tube removed.
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 ...
It's hard to believe but 2 years has passed since my Whipple ( Nov 17, 2023). I am loving my new post Whipple life, and wasn't sure I would be able to say that. The first 5 months after the Whipple were really rough , I was in hospital for all of it other than the 21 days at a friends place struggling with drains, leaks/fistula and pain. Around the 6 month anniversary things started to improve, the fistula/leaks had healed, and the feeding tube was removed. Life was slowly starting to return to the new normal. I turned 62 in August and can't believe the things I have been able to do this past year. I returned to part time work as mountain bike guide and coach with Alberta66 MTB . Spent more time on the bike with friends ( biked 3200 km with 64000m of elevation gain), got to see most of my Happy Places . I Volunteered with Friends of Kananaskis and West Bragg Trails , helping with trail maintenance and as a trail host ( to date over 300 hrs this year). The tra...
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...
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