Feeding Tube Awareness Week: What it Takes to be a Tubie

The evolution of a tubie: from my first 3 NJs to my GJ

I have now had a feeding tube (various kinds) for an entire year. It seems appropriate to write about that now with this also being national feeding tube awareness week. My first real experience with a feeding tube was long before I got sick. I was in nursing school with a patient I will never forget. I think this was about three years ago when I was in clinical with an unusually light load that day. I was lending a hand to some colleagues when I heard screaming at the end of the hall. Hoping to help, I ran to the room with all the audible commotion. There were two nurses attempting to shove a tube up this patient’s nose, while a group of students stood at the foot of the bed watching. When you place a nasal feeding tube, you instruct the patient to put their chin to their chest and take frequent, small sips of water to help ease the tube down their throat. What most people don’t realize, is that these instructions require the patient to abandon all natural instincts for the given situation. If someone is shoving something up your nose (which hurts, by the way), you are going to instinctively pull away from them and put your head back further (not at all towards your chest). That’s the first thing to realize. Secondly, to an uneducated patient, a procedure such as this needs to be explained more thoroughly because it may not be clear how a tube going up their nostril is going to end up in their stomach to actually help them. As it turned out, the combative patient in the room at the end of the hall was not trying to be difficult or overly dramatic, as her nurses thought. She was simply scared. I was appalled that when I arrived to find upwards of ten medical professionals in that room, not one of them was consoling the patient. To this day, I’m not sure why this was the case, but when I rushed in and looked in that woman’s eyes, it was like my life flashed forward for a second and I was experiencing my own first nasal gastric tube placement. It was like I already knew that pain. Then, I put myself in her shoes and realized she didn’t even understand what was being done to her. She had been throwing up blood, so time was of the essence so they could quickly decompress her stomach. However, they had to keep stopping and restarting so many times anyways because of the patient’s behavior. So I asked the nurses to stop for one minute while I talked to her. I explained the whole process to her and most importantly, that it was going to make her feel better as soon as the tube was in place in her stomach. I told her who all the people were in the room and asked if it was okay that the other students were watching to learn. Then, I asked if I could hold her hand while the nurses resumed their task. The sweet woman relaxed instantly and cooperated to the best of her ability. Within minutes, the NG was in place. It turned out that the patient was so resistant because she thought they were putting the tube into her brain via her nose! All it took was a short explanation and a little compassion. That served as an important lesson for me once I became a nurse too. No matter how busy you are, or how focused you are on the importance of the task, the patient needs to feel safe and lovingly cared for.

There are many kinds of feeding tubes and patients get them for hundreds of different reasons. Nasal tubes are used first because they are temporary and some can be placed at the bedside by a nurse. For a more long-term option, there are tubes surgically placed into the abdomen. Both types have options for where the tube will end internally. The typical standard is for the final destination to be the stomach. However, many cases require bypassing the stomach. In which case, the tube could end in the duodenum (just after the stomach) or the jejunem (in the small intestine). The nasal tubes are as follows: NG (nasal gastric), ND, and NJ. I had an NJ for 5 months, but I had five different ones. Since NJs are the longest, it is easier for them to get clogged with formula and need to be replaced. Anytime a tube is going past the stomach, it can no longer be placed at the bedside. They must be placed in an interventional radiology room to ensure proper placement. Because of that, all my NJs placements were done under sedation. I didn’t luck out completely though, because many of the diagnostic tests I needed required an NG. So I had my share of tubes shoved up my nose while I was awake too. I often even had to have an NG placed while I still had my NJ in the other nostril. During one of my sedated NJ placements, my doctor chose to surprise me with the placement of a bridle. Bridles are typically used for small children and confused elderly patients. It is basically a string that is tied around the bone of the sinus cavity in the center of the face. It prevents the tube from being pulled out. It is also, in my opinion, one of the purest forms of torture that can be done to a human being. By the time I got home that night, my face was so swollen I could barely breathe or talk. I developed a serious infection in my sinus cavities and couldn’t stand the unwarranted torture any more. I got my medical scissors out of nursing bag and cut that bridle out of my life!

This is hardly flattering, but it shows how swollen my nose and face were right after the bridle placement (and right before the self-removal).

When I had my NJs, my throat was constantly sore and irritated. Sometimes I even lost my voice for days at a time. I was getting formula for most of my calories, but I was still allowed to eat whatever I felt like I could tolerate. Most normal foods would get stuck around the tube in my throat, so I mostly ate ice cream and sorbet. For those five months, I actually think I lived on formula and Wendy’s vanilla Frostys! After a while, the doctors realized they still hadn’t figured out the root cause of my GI issues and it became apparent that I wouldn’t be able to eat enough to sustain my life without a feeding tube anytime soon. If they continued to use any more nasal tubes, I was at risk for permanent damage to my vocal cords. In June, I was hospitalized to have a GJ tube surgically placed. That type of tube went into both my stomach and my jejunem. The G portion was for the ability to vent air and drain fluid from my stomach. I was still in the hospital on my birthday, so I ate part of a pink cupcake. I became well known on the unit for having a Farrell bag full of sprinkles and pink frosting. The J portion was for my actual feedings of formula. During that same hospital stay, they surgically placed a port in my chest to allow for better access for my frequent blood draws. Unfortunately, a mistake was made in that surgery and my port had to be removed. They took me back for two more surgeries, but eventually I got a working Broviac central line instead.

My Broviac was put to good use once September came around. I was no longer tolerating the formula feeds and had to be put on complete gut rest (meaning nothing through my digestive system at all). That’s when TPN was initiated through my central IV. It included all the fluids, calories, and nutrients I needed. However, I still needed my handy dandy feeding tube– for medications 3 times each day. Now, I’m still on TPN (but thankfully off the gut rest), and since I can’t tolerate any liquids by mouth, I can’t take my meds orally. I am still reliant on my G tube for that purpose. Although, many of you who follow my blog know that it has been causing me a lot more problems and pain than good. And lately, the pain it is putting me through is even more agonizing than before my Botox procedure. Dammit. I am trying to work with my doctors to come up with some sort of plan to be able to remove my feeding tube, even if it has to be surgically put back in after a little while. It wouldn’t be a very productive step, because it would most likely mean getting all my medications through the IV route. But I am simply hoping for a night that is painless enough to sleep through.

The bottom line is, there are many kinds of feeding tubes and they can be placed for many different reasons, in my case gastroparesis. They may cause pain, and definitely cause challenges, but they also save lives. I hope that one day, the technology will be improved for future patients’ experiences, but I certainly am grateful for the feeding tubes I have had this year. If you see someone out in the world with a feeding tube, they would probably want you to know this: you can’t jump to any conclusions regarding the nature of their tube, but it IS helping them, sustaining them, or saving them. And also, now that you know more about what it takes to live with a tube like that, maybe you will have even more respect for the fighter who is attached to it.

P.S. Shout out to all the parents and loved ones (especially mine) who help take care of all the feeding tubes and their fighters. I have super tubie parents. Oh and Tiko is pretty supportive too! If only he had a tubie dog shirt..