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.
Originally posted on social media June 23, 2024. "UPDATE: June 24, the fistula scab fell off this morning, revealing what looks like a fully healed wound site. I am so excited, it's been something I have dreamed about for over 6 months I will still go for the CT scan, as the incision site is deformed with a depression or "valley" where the fistula was. ORIGINAL POST: I had a follow up last week with the surgeon, I was asking why it's taking so long for the fistula to heal. The fistula hasn't out put anything since Apr 2 (84 days to the date of this post), and the last CT scan was done on Apr 17. He showed on the CT scan what the fistula and pocket under it looked like over 2 months ago. I guess it explains some of the reason why it's taking so long to fully heal. I have a follow up CT scan in 2 weeks and hope it shows the healing is progressing. I was given the okay to try fluids by mouth last week, that seemed to go well. Nervously I have moved on to ...
UPDATED June 25, 2026 The number of polyps / adenoma, in my remaining colon, rectum has dropped and there was nothing to bioposie in stomach this last follow up. Doctor still wants to continue with a 3 month follow on the remaining colon, rectum but move to 6 moth for the stomach. This is some what good news. I am still taking the PPI and haven't made any other changes so not sure why the number of adenomas has dropped. 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 signific...
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...
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