G/J tube

 In October 2020, I was first introduced to Pancreatitis. It was an unwelcome extremely painful friend. I spent a total of 4 weeks in the hospital between 2 different hospitals and treatment teams. One of the interventions introduced was a NasoJejunal (NJ) tube. This is a tube that is inserted through your nose and navigated down into the intestines. The first time I had it placed they came to my room and I had no idea what to expect. It ended up being a very painful and unpleasant experience and the pain lasted for around a week after the placement. Since that time I have had 5 different NJ tubes placed through the same procedure and spent around 5 months receiving my primary nutrition through these feeds.

Cystic Fibrosis results in thick sticky mucus and in my pancreas this mucus stops the enzymes that digest food from being able to fully leave which results in them digesting the pancreas itself. This leads to excruciating pain and inflammation known as pancreatitis. Blood tests can show elevated levels of these enzymes in blood and imaging studies often show atrophy or pancreas deterioration which is often how pancreatitis is diagnosed. In January of 2021 I had an ERCP procedure done which is basically a procedure in which the doctor goes in and endoscopically cleans out the ducts in the pancreas. This helped and after a few weeks I was back to eating a fairly normal diet. Over the summer of 2021 I had a mild bout of pancreatitis that went away with a clear liquid diet. On October 10th of 2021, I woke up in excruciating familiar pain. The pancreatitis was back. 

After around 2 weeks of not being able to tolerate food orally an NJ tube was placed. The first tube ended up having a kink in it and by the time I got home the doctor on call told me to pull it out myself and come back in the morning for another tube to be placed. This was complete torture. After having just gone through the procedure and the pain involved with it not only to pull a tube that is much longer than I had expected out of my body, but also to go through the pain of getting it placed the next day was rough. It was also decided that home health would come daily to do blood draws to monitor for re-feeding syndrome. It was a lot to try to navigate work around and I felt very self conscious about the feeding tube while meeting with client's as their therapist. It was also frustrating to have to tell clients I needed to reschedule when home health was running late or when last minute doctor appointments would come up. 

That tube stayed in until the day before Thanksgiving. After doing feeds it is important to run hot water through the line to avoid clogs. As I was using the syringe to squirt water through the tube it would not go and so i thought if i pushed it hard against the counter the clog would be forced down. Instead the clot held steady and the tube itself exploded. This resulted in a hole on the part of the tube the leads into my nose. I felt so defeated pulling that tube out. 

The CF team had brought up the idea of a permanent feeding tube since about a month into me having one. I was very resistant to this idea. It felt big and scary and like admitting that I'm not the type of sick that gets better. A feeding tube for the long term means that my pancreas isn't going to magically get better and I'm not gonna be able to keep up nutritionally. Over time my willingness had shifted. In October of 2021 in my initial appointment about this bout of pancreatitis the dietitian and doctor I was meeting with in the appointment recommended a g/j tube instead of getting an nj tube. I was stubborn and got my NJ tube. At the next appointment a different doctor stated that if I had the nj tube for longer than a month it would be time to look at the g/j tube. I agreed with this deadline and was a little disappointed when at the next appointment a different doctor did not want to do the g/j tube and instead wanted to consider TPN feeds (a type of feeding in which nutrient are put through an IV directly into your blood). 

By the point of the day before Thanksgiving I felt ready for a long term answer and to no longer have a tube in my nose. I also was in no place emotionally or mentally to go through the trauma of having another NJ tube placed. When I talked to the nurse she agreed to let me wait to have the nj tube placed until I could talk to a doctor on Monday. She did however place an order for a feeding tube in case I got desperate before Monday came around. 

Why would you want to have a hole surgically placed in your stomach when a short term solution is available and works for you? This is a question I've come back to a lot. I know NJ tubes work and they are familiar. Yes they are absolutely miserable, but I know what to expect with them. I joined a group for people with chronic pancreatitis and asked about feeding tubes and not one person said the NJ is better than a permanent option. In fact the longest anyone else had an nj tube for was a month before getting the permanent one. Recovery is tough after surgery, but it's a one time thing. It's not missing weeks of work to recover from an nj tube placement or spending hours on the phone coordinating it's placement and then figuring out supplies with the home pharmacy. It is one painful month and then hopefully things are smoother and when I get sick, I'll have what I need to treat myself at the start. It's being able to take a break from forcing myself to eat and finding a relationship with food that can be enjoyable when my body is ready. With pancreatitis food almost comes with a pain price tag attached and I know I'll pay the consequences of every bite. It's no longer stressing about what the scale reads when I go in to the CF appointment because if it's too low it could be time for another NJ tube.  

It is coming to terms with the fact that my body is not normal and I do have a disease that will continue to take little victories. All my fighting and minimizing will never be able to stop the losses, but it can make me miserable. This is me leaning towards uncertainty and trying to move towards what matters given the harsh realities of life. I don't know if the g/j tube is the right choice, but on December 17th, I will give it a try.