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.
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...
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Originally posted to social media Feb 7, 2024. I was readmitted on Jan 28, 2024 after developing a larger opening in the fistula, incision and more complications . "A mix of XRay, MRI, and CT scans, still trying to sort out the leak from my incision. They found the leak, Liver bile duct. They tried to insert a stent/ drain in to control the leak and let things heal, but weren't able to. A second attempt was booked but canceled as there is a blood clot in the left portal vein of the Liver, also air and the bile duct is in flamed. So plan is to hopefully repeat the stent/drain insertion in 3 weeks. Till then they will take me off fluids, food, and try shut down the digestive system see if the bile leak slows down and heals. Fingers cross 🤞." Feb 2, 2024. Jan 30, 2024.
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