ERCP... The Journey

Since around September of 2013 I had started experiencing more symptoms that my pancreas was beginning to flare. I pushed off going to the doctor because I knew it would probably mean surgery. I was nauseous all the time, but more than that as soon as I would swallow a bite of food it would immediately come back up. It wasn't like vomiting, it was more like when you see a snake regurgitate its prey. I also have severe sharp pains right below my sternum that radiated to my back. It felt as if I have razor blades inside. Every time I would eat the pain would significantly increase. 

So finally I decided it was time to give my pancreatic specialist a call. I explained my symptoms to the nurse who immediately said they wanted to see me. Due to weather and scheduling it took a couple of weeks to get my appointment but finally I made it and was pleased that they not only didn't think I was crazy, but agreed my pancreas was no doubt beginning to flare. They ordered some blood work and a CT scan just to rule other problems out, but I was told upfront that another ERCP was in my future. (An ERCP is a procedure where the function of your pancreas is tested, temporary stints are placed in your pancreatic or bile ducts to help stretch them out and take some pressure off your pancreas. Click on the link above to learn more.)

After the CT and blood work were normal we scheduled the ERCP for the following Friday. Now the stints that are placed are temporary because they are extremely painful when they are in, and so they are only left in in extreme cases. Most patients have them in for a few days while they receive in-patient care at a hospital and IV pain and anti-spasm medications to help you through the pain. And trust me, it is VERY painful.

All dressed for the party! I have a lovely gown, bracelets and piercings. Let's get this party started!

Once I was wheeled into the operating room I was able to have one last chat with my doctor before they put me to sleep. He said he had decided that he was going to put in the largest stints that he could in hopes that it would stretch out my pancreatic/bile ducts enough that maybe I could go longer than just three years before needing the procedure again. At the time it sounded great. I even shrugged off his warning that this meant that the next few days in the hospital would be EXTREMELY painful. Remembering back to my first ERCP they also removed my gallbladder so I didn't think that it could be much worse. After all they weren't removing any internal organs this time! I was so very wrong. Even now, three weeks, later I can barely piece together the five days that followed. The pain was something I have never ever felt before. And as you all know I live in pain every day.

Feeling a bit drowsy in recovery! Waiting for my own room. According to my parents I continually muttered "it didn't hurt like this last time!"

They put the stints in on a Friday, and I was scheduled to have them taken out on Monday and then if I could eat and was doing well I could go home the same day. Like I said about most of those days were a blur. I know Friday or Saturday I spent a significant amount of time with my head in a bucket! For the most part my time was spent receiving pain and anti-spasm medications through my IV, passing out within minutes of the injection, waking up and counting down the time until I could receive more medications. Finally the nurses starting writing on the board what times I was allowed to receive which medications. I had brought many things to do during my stay. Magazines, books, knitting, and of course I had a TV. Between the pain and the medications I never opened a book or magazine or watched even a 30 minute TV show. When I watched anything it was the board and the clock counting down until my next injection and praying to make it that long. 

Snoozing away in my room, no doubt enjoying my medications! The hospital has a new wing where surgical patients all have private rooms! They were quite large too. I think having your privacy helps the healing! I was very thankful!

A rare but serious complication can arise from this procedure that causes the pancreas to flare. After the stints were removed, as planned, on Monday they checked my blood work. Sadly my enzymes were rising, which meant my pancreas was becoming inflamed, which resulted in my being held another day. Once the stints came out I was able to do more and wasn't in such severe pain. I could take a shower (to everyone's relief), I walked up and down the halls twice, and even talked to visitors. Thankfully a full blown flare was avoided and I was released from the hospital Tuesday evening.

As happy as I was to be home, it poses a whole new set of struggles. I took my medications, but they didn't seem to touch the pain. Between Tuesday and Thursday I barely slept one hour straight. I finally had to call the doctor to get a higher dose of pain medication. Once on a higher dose I could sleep and begin to heal. It has only been three weeks, and I am no where close to being back to normal. I still am in pain, but it is not constant. I am on a limited diet of 20g of fat per day and to avoid hard to digest foods like fatty meats, and raw vegetables. The restrictions will slowly be lifted over the next few months. They predict as extensive as it was that it will probably be six to eight more weeks before I really start feeling better. I am now hoping and praying that all this pain will result in going longer than three years between procedures. Typically patients go through it every three to five years. I believe if I can make it five years that will be a huge blessing! And next time I won't shrug off the warnings of how much pain I will feel.