Apr 1, 2024, Happy Enterocutaneous Fistula healing day.

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 fell off the fistula site revealing the healed tissue.

Some of the the back story: On Nov 26, 2023, 8 days post surgery I developed complications, a leak( maybe 3, pancreaticojejunostomy (PJ) leak, followed by a hepaticojejunostomy (HJ) leak and, a gastrojejunostomy (GJ) leak, it’s unclear if they all started at the same time) and the start of a stubborn Enterocutaneous Fistula. For some reason there were delays in a CT scan and finding out why I was having pain, and abdominal distention. Finally 2 days after the CT scan was ordered I was sent for the scan. I remember as I was being rolled down the hallway I started to notice a strong foul smell. As I got to the CT room I said to the nurse “ I am sorry but I think I had a BM?” She said no worry we will get you cleaned up. As she pulled back my covers we noticed I was soaked in a smelly green liquid. It was coming out the incision. I was very upset at what I saw. ” What the fuck is that?” I said. She calmed me down and tried to get me cleaned up. It was a very strange thing to see fluid like that coming out of my body, it was leaking out of my incision. I don’t think I will ever forget that sight. The nurse wrote this in her report: ” Upon arrival the patient had copious amounts of purulent discharge from his abdominal incision site and is bedding was entirely saturated, it is estimated that approximately 1.5-2 L of fluid had spontaneously discharged from his midline incision site.” This was the start of the formation of the fistula.

As part of an effort to slow down the the secretion of gastric acid and digestive juices I was put on Octreotide,"It directly inhibits stomach acid and pepsin secretion, while also reducing the blood flow (splanchnic circulation) to the GI tract". I was had to stop all oral intake and TPN feeding started, eventually transitioned to a NJ feeding tube. I was told nutrition and resting the digestive tract would be the main things that would help the fistula heal. It did work eventually.

I can help can’t help wondering if Creon caused extra damage to internal tissue when it got into the gastrojejunostomy (stomach) leak, then into the Enterocutaneous Fistula that had formed because of the leak? At one point the fistula seemed to be healing and closing up. It was about the size of a pencil in early Jan 2024. Then I started taking creon to help with digestion, after a few days the fistula expanded in size ( to about the size of a golf ball), and what looked like tissue was hanging out of it. I was readmitted to the hospital for another 90 days. I am sharing this info so it maybe help others and tell a story of a very stubborn fistula healing. I still have a large strange scar and have to protect the area, but happy to say I have been able to strength my abs and return to a active life. All those long sleepless nights worrying seem like a distant memory and not sure if there is any long term damage, I am very thankful and loving my life now is the best out come I could have hoped for. Stay strong and never give up.