I’ve talked a lot about feeding tubes but if you’re not a member of the tubie community or know someone who is, chances are you’re lacking in your Norwegian language skills (if you don’t get the reference, read this). So, since today is the start of Feeding Tube Awareness Week, here’s a quick lesson on feeding tubes!

Welcome to Tubie 101!

The very first tube I had was an NG/J tube. That acronym stands for nasogastric/nasojejunal which I swear isn’t as complicated as it sounds. Basically it means that it goes in through your nose (naso) down to your stomach (gastric) or the second part of your small bowel, the jejunum (jejunal).

I was lucky enough (note the sarcasm) to have both tubes in one! I had a thin tube that ran down to my jejunum (NJ) and a thicker tube over it that went to my stomach (NG). When people have both a G and a J tube as I did and currently do, usually we use the J port for the food to go in and the G port to vent, which means to release air/gas or to drain the stomach.

NG tubes can be placed bedside by a nurse or sometimes even the patient but because the small bowel is, well, small in diameter and extremely long and maze like, I had my tube placed at interventional radiology. I laid down on a table underneath a big X-Ray camera and the nurse numbed my nose and throat. Then, as the X-Ray took constant photos that you could see on a big screen, the radiologist used a guide wire to navigate into my jejunum than placed the tube over that and removed the wire.

The procedure was about 45 minutes to an hour because of how finicky small intestines like to be. It was mildly intimidating since it was done in a sterile procedure room with the nurses and radiologist all donning protective gear from the radiation and caps, gloves, and gowns but the atmosphere was great! Interventional radiology has some of the best staff. The nurses made sure I was comfortable and the radiologist put on his favorite playlist and cracked jokes the whole time. Having a tube shoved down your nose is never a pleasant experience, but the staff made it a lot better!

Since nasal tubes are recommended to be changed every 2 weeks, If the doctors see you need a tube for a longer amount of time or you are going to be using one outpatient, they typically will place one directly through the abdominal wall. These tubes are a lot better for at home use since they can last up to a year and don’t carry the risk of sinus infections like nasal tubes do.

There’s two main ways to differentiate these tubes: where they go and how they’re placed. These tubes follow the same abbreviations as nasal tubes with G standing for gastric, J for jejunal, and G-J for a tube that goes both to the stomach and jejunum.

They can be placed two different ways, either with an endoscope (PEG/PEJ tubes) or surgically (G/J tubes). Getting a tube put in endoscopically is less dangerous and heals faster since you’re not put under anesthesia typically and they don’t use stitches to hold the tube in place.

My current tube is a PEG-J tube, which means it was placed endoscopically and goes both to my stomach and jejunum.

When I first got it placed, I started with a PEG. The procedure was done by a gastroenterologist in the endoscopy lab. I was put under sedation (thankfully) so I wasn’t conscious for any of it. The doctor used a long tube-like camera called an endoscope to go down my esophagus into my stomach. Then, he used the scope to blow air into my stomach and then shined a light that you could see through my skin to show where to put the incision. He then cut through the skin and put the tube through. Inside of my stomach, the tube is held in place by a plastic bumper.

This procedure was a lot quicker than the nasal tubes, taking only about 15 minutes. But where is won in time, it lost in pain. Having a foreign object lodged through your skin and muscles is definitely not comfortable and it took several weeks and lots of morphine for the pain to subside. Now, I don’t even feel it there!

I used this tube for a couple of days when we quickly realized that I couldn’t tolerate the feed going directly into my stomach. So, back to the endoscopy lab I went! This time, it took much longer than the first and much longer than expected, about an hour and a half. The doctor threaded a smaller tube through my already present one. Then, using an endoscope, he guided it into my jejunum. Unfortunately, he couldn’t get it completely straightened so it makes a loop in my stomach but it still does the trick!

That experience was a much less pleasant one. Because it took longer than anticipated, I woke up during it. It was somewhat scary because I had a camera down my throat but the nurses were quick and got be back asleep as soon as they realized.

Beyond the main types of tubes I’ve explained here, there are so many different styles of tubes! Some are long and some are short. Some are skinny and some are thick. Some are actual tubes and some are little port like things that sit almost flush to the skin called buttons. They may all be different but they serve the same purpose: to keep us alive and fed.

Having a feeding tube may seem disability with being tethered to a machine for most of the day but, to me, it was a blessing in disguise. It’s allowed me to get nutrition and, consequently, energy and strength that I wouldn’t have without it. As like my fellow tubies, I may not be alive today writing about this had it not been for my feeding tube. For us, it’s a lifeline, our main way of getting the nutrients our bodies need. Though it may not be ideal or the norm, I’m forever grateful to my tube for helping me get my life back.