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 Mar, 2026. Happy to say blood work looks great, Ferritin, Iron, Vit D and Vit A are all back up into the normal range. 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 gr...
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...
Originally posted to social media on Dec 5, 2023. "Day 19th, post Whipple Surgery. Things are going along smoothly, no great ups and downs, just some what of a even ride. Last week I had my first CT scan , and it showed a few pockets of fluid. Drains and meds were engaged to help treat these. On this past weekend, bloating, and pain started to return, even with 3 drains still drawing off fluid, pressure was growing. The medical team decided to send me for another CT scan. It showed another big pocket of fluid. Monday a new drain was installed to help. It drew off 450ml of fluid before I left the procedure room. Today was more of a spa day. Thank you @maureentowns for the fancy nails" Spa day Dec 5, 2023. Dec 5, 2023.
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