The importance of advocating for your self.

 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 wasn’t done until Nov 26, 2023. 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 and advocate for my self and my health care. Nobody knows your body and how you feel better than your own self. 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 coming out of a enterocutaneous fistula that had formed in the incesion. Once discharged it was pointed out to me I was now out sight of the medical team and it was really important that I keep tract how I was feeling and make notes on what was going on. I was eventually readmitted to the hospital, Jan 28, 2024, after taking Creon and the active fistula expanded from a pencil size hole to a golf ball size in a week, with a large piece of what appeared to be tissue falling out of it. I did tell the medical team that after taking the Creon I had a strange feeling in my stomach, like there was something stuck there or touching. It was hard to explain, but it got so bad I had to stop taking the Creon, until the team asked me to try it again, which I did.

There are several key things I think that happened during the long recovery and if I hadn’t made notes, taken pictures, and advocated for myself things may have taken more time to heal. When the leaks first started, Nov 26, 2023, a large amount of fluid( and at times a ticker paste)was leaking out of the incision and a fistula formed. To collect the fluid most of the time I had to wear a wound manager or ostomy bag over the fistula. The bag collected the fluid but also air or gas bubbles. I kept asking where these bubbles were coming from. I was told it was coming from the small bowel and leaking out around the new connection made with the liver bile duct, and mixing with the bile fluid. Eventually the team had a stent/drain put into the liver bile duct, Feb 22, 2024, to redirect the fluid into the small bowel. This seemed to help with the fluid, but the air or gas didn’t stop leaking into the bag. I asked why and again was told the bubbles were coming from the small bowel leaking now around the stent. Also there was more strange thicker paste at times. It took weeks of me telling them I had a strange feeling in my stomach, and it got worst when I was hungry. My stomach would rumble, I would hear some fluid and gas move and a few seconds later the bubbles would come out into the bag. I couldn’t understand why there was still gas leaking out the fistula, but again was told it was coming from the small bowel and still leaking out a round the liver bile duct stent. To me it seemed like this gas was traveling a long difficult path, because my stomach would rumble, I would feel the movement and almost immediately the bubbles would appear. I kept bring this up when talking to the team. Finally, Mar 15, 2024, it was discovered I had a gastrojejunostomy (GJ) leak from the new connection between my stomach and small bowel. This is where the gas and fluid / paste were coming from. Not sure why this leak didn’t show up on earlier CT scans.

Another incident that happened after I was readmitted was some confusion on a plan of treatment. On Feb 15, 2024, a morning visit with the medical team it was planned that I would be taken off oral intake of food or fluids, a PICC line installed and  started on TPN feeding to see if this would slow down and stop the fluid / paste and gas that was leaking out of the fistula. I was happy with this plan, very excited and hopeful this would help. The PICC line was scheduled to be installed before noon. I was so excited I went out a sat on the stretcher that was setup to take me down to have the PICC line put in. The nurses told me it would be sometime, and I wouldn’t go till the porter came to get me. I didn’t care I was ready and wasn’t going to miss my ride so I sat there. While I sat there an intern came to tell me there had been a change in plans. The PICC line was being canceled, they wanted me to start eating and get me strong enough to send home so things would heal. I was shocked, I didn’t know what to say. I got off the stretcher and went into my room, and sat on my bed. This didn’t make any sense why they changed things. After a few minutes I went out in the hall way and found the intern. We had a conversation, and I told him I had a bad feeling about this change and didn’t think it was the right thing to do. He asked if I was refusing the new plan and I said yes. I wanted to stay on the original plan, I was sick of seeing fluid / paste and gas coming out the fistula and didn’t feel it would stop if I kept eating. It was a very hard decision to make, to go against the medical advice because of a “gut” feeling I had, but in the end it proved to be a very helpful decision. It was later discovered, Mar 15, 2024, I had a gastrojejunostomy (GJ) leak from my stomach to the small bowel, so some of what I was eating or drinking was leaking out the fistula.

I have mentioned before that I had a strange feeling in my stomach, and I was confused on where the gas was coming from and why it wasn’t stopping after a PICC line was put in, I was put on TNP feeding, Feb 15, 2024, and had the bile duct stent put in Feb 22, 2024.  Mar 6, 2024, after being on the TPN feeding and nothing by mouth one of the doctors on my team came to see me and asked my to try sipping on water and see if this changed the out from the fistula. So I did, but it was hard to tell if the output changed, so I was advanced to full fluids, which I tried.  Mar 13, 2024, after drinking some red Gatorade I noticed some red discharge from the fistula, I made a note of this and took pictures. I showed it to the team. Mar 14, 2024, after drinking a chocolate Insure drink I noted and took pictures of what looked like the chocolate Insure. I showed it to the team, and was told it was still coming from the small bowel, leaking passed the stent that was in the bile duct and coming out the fistula. This again seemed like a very long difficult path for the fluid/ paste to be traveling. So I asked why did it smell fresh, and look like chocolate? Are you sure it isn’t coming right from my stomach? Mar 15, 2024, after some discussion it was decide to have a tube inserted into the fistula and sent down to Fluoroscopy to have dye injected to see if it went to the stomach.  This time it did show the dye traveling to my stomach and confirmed the leak. Not sure why this gastrojejunostomy (GJ) leak didn’t show up on any other CT, MRI, or Fluoroscopy  before.

Keeping notes, advocating, and taking pictures help show a pattern, evidence that there was something wrong and it had been missed. These are just a few examples from the 140 in total hospital stay following the Whipple Surgery. I am still taking notes, pictures and monitoring how I feel. Don't get me wrong, I am very thankful for the care I received, but I don't think it hurts to share stories that may help.

#fistula, #Whipple, #surgery, #complications, #medical, #research, #advocating, #for your self, #recovery