National Feeding Tube Awareness Week

Long time no see! Thought I would do a quick post in honor of it being National Feeding Tube Awareness Week!

I've had a feeding tube (on and off) for around 4.5 years now and I can without a doubt say that it has saved my life. Sometimes you have to be patient and try different types. 

Before I was diagnosed with positional Superior Mesenteric Artery Syndrome, I was given an NG tube. It was pure hell. I went from throwing up all day to throwing up all day AND all night. It was horrible. Despite still believing that I was having a "brain to gut" response and that there was nothing structurally wrong with me, my doctors eventually switched me to an NJ tube which bypassed my stomach altogether. The tube was on my face but it was okay because in a way it validated all that I was going through. I was diagnosed with SMAS in a clever way that helped change the way that doctors test SMAS now, but that's a whole other topic. BUT when we discovered that I had SMAS, it explained to so many doctors why an NG tube was so terrible for me. I had a compressed duodenum that only presented then I was standing or sitting up. Basically I had a clogged pipe so when my stomach was constantly filled with tube feeds, it had nowhere to go but up! 

I've always had a love hate relationship with my feeding tubes, but it truly has kept me alive over the years. During a corrective open surgery due to some complications from my original SMAS surgery, I was placed on a GJ tube. This tube was inserted during surgery, and was a vital part of my recovery. I was able to drain bile from my stomach while also getting full nutrition into my jejunum. I learned to love my feeding tube because it gives me the nourishment that I can't get fully by mouth. It has helped me recover from very serious and hard surgeries. After my MALS surgery, I was already used to a GJ and a new one was put in during that open surgery. And I was so grateful to have that tube as that recovery was one of my very worst. I needed to drain 6 liters of bile a day from my G tube. And trust me, it is way better being able to drain from a tube than throw all of it up. 

My last bout with a feeding tube was an area that I need to bring some awareness to. I don't mention this to scare anyone, but with all of our experience we did not fully understand how important it is to consider the complications that can happen from a tube. I had one year of no tube feeds and even got to get my tube removed. I was able to eat by mouth and maintain my weight without tube support during my freshmen year of college. It was amazing to feel "normal" even when it was during COVID. Unfortunately in June I caught a virus. We don't think it was COVID, but it hit me hard and it became increasing difficult to eat by mouth. My GI doctor that I loved had moved away to Seattle and I had a new doctor. His words to me when I had lost 4 pounds by the time I got to an appt with him was "Ok by November I want you to gain 5 pounds." Unfortunately, my vomiting got worse and I began to lose more and more weight. By October I weighed 93 lbs. Yes. I am 5'7 and weighed 93 lbs. I didn't have a feeding tube then and I was slowly withering away. My mom was fighting to get me to my doctor to get help. It took a lot of work as all of you tubies can understand. But, what I am about to tell you deserves an extra paragraph.

My surgeon was able to get me an order to get a GJ placed by interventional radiology. It was my first time getting a GJ tube inserted without it being done by my surgeon during an open procedure. My mom asked questions about how it would be done and even asked if an endoscopy would be better. But we were told that it could be done externally. My weight was so low and I desperately needed enteral nutrition. Unfortunately it did not go well. I don't want to scare anyone but I just need you all to understand that there can be complications! This procedure was more painful than any surgery recovery that I had. My symptoms were pretty bad. The pain was unbearable so much that I was screaming in pain. I have NEVER screamed, even after the worst open surgeries. The IR surgeon called my mom when I was screaming and told her that "it was as if she stabbed me 1000 times with her whole body weight" to get that tube in. She said I needed strong pain meds, which I hate to take. The following day I was given a mickey button tube, since the first surgery was a tube that I didn't want. If given the choice, I would have opted for an NJ tube instead. My mom asked if it was safe to switch it within 24 hrs and we were told yes. I was discharged 3 days later and this is what I want people to know. Be aware that tubes can have complications. I was so swollen everywhere. My hands and feet and legs and abdomen so swollen. My heart rate got to 175 BPM at rest. My BP was awful. I couldn't walk easily. I was discharged after 3 days going from 93 pounds to 111 the day of discharge. I am mentioning my symptoms and what happened to bring awareness of what to look for when something goes wrong as I was told that it was "normal" when discharged.

Long story short, that tube placement caused me to almost lose my life. My mom and step mom got me to UNC hospital 1.5 days after discharge and by that time I was 120 pounds. This was 6 days after tube placement. This is another part of my story and was very scary, but basically the docs got me to emergency surgery and saved my life for over a week. I was put on a ventilator and left open due to infection everywhere caused by the tube detaching. I had a hole in my stomach spilling into my body the entire time. The infection was so bad and I was so swollen that they had to leave me open for over a week. I had three surgeries that week. It was a hard recovery (which you can read more about here) and I was in the hospital for five weeks. During my second surgery that week they gave me new tubes that I had never had. I had a G tube in my stomach that was so helpful for draining, and I had a J tube that went directly into my jejunum. Once I recovered from surgery and went off the PICC line for nutrition while I recovered there at the hospital, I was able to do J tube feeds. My J tube has made the BIGGEST difference in my recovery and getting stronger. It has allowed me to gain some of the weight I had lost and has put me in a MUCH healthier spot than I was four months ago. 

I've had pretty much every type of feeding tube by now - NG, NJ, GJ, G, J.... I remember when I first got sick back in 2017, I was so scared people would judge me for having a feeding tube. People would stare and it was hard. But then I learned to stare right back. Who cares if you have something a little different? It's something to be proud of, because it shows how much you are enduring. And I started to own it.