I get asked this question a lot. Probably at least once a day. Which is fair, because I used to ask this question too. I needed a feeding tube after I was diagnosed with gastroparesis last December. I immediately read every single pamphlet and brochure on the internet about feeding tubes, which was a huge mistake. It just freaked me out more, and didn’t really learn anything that I didn’t already know.
I feel like this question is rarely discussed, mostly because it is really hard to answer if you’ve never had one. It’s also really hard to answer if you have had a feeding tube, just because everyone’s experience is so different.
Feeding tubes can come with a lot of challenges, but they do not need to be scary. This blog post will tell you what the brochures don’t, covering some of my experience dealing with feeding tubes.
What is a Feeding Tube and How Does It Work?
Individuals with a wide range of medical conditions affecting their ability to eat and digest food may need a feeding tube. It supplies nutrition to those who cannot get enough nutrients by eating orally. Tube feeding is also called enteral nutrition or enteral feeding. Liquid nutrition, or formula, is delivered directly into your digestive system. Some feeding tubes, like mine, also allow you to deliver water at the same time.
Simply put, the physical feeding tube is a narrow plastic tube inserted through your nose (naso) or a cut in your abdomen (percutaneous) into your stomach (gastric) or small intestine (duodenum or jejunum).
The tubing that stays inside your body connects to an external feeding bag, which is filled with formula and hangs on a feeding pole. The feeding pole is basically an IV pole. The formula may be delivered via a pump that connects to the pole and pumps the formula through the tubing into your body over several hours. Or, the formula can be delivered by gravity, in which you hang the feeding bag and tubing on the pole above stomach level, and gravity moves the formula into your feeding tube. You can also use a syringe to push the formula into your feeding tube.
I use a feeding pump, and run my feeding tube for 9 hours at a time, but this will be different for everyone based on a variety of factors, including how much formula you need. Some people’s tube feedings run 24 hours straight. The amount of formula a person needs is based on how many calories they need.
Types of Feeding Tubes:
There are several types of feeding tubes.
When a small cut is made in the skin to place a tube, the opening is called an ostomy. There are two types, based on where it is located:
Nasogastric Tube (NG Tube)
NG tubes are placed through your nose into your stomach.
Nasojejunal Tube (NJ Tube)
NJ tubes are placed through your nose into your jejunum (the first part of your small intestine).
Gastrostomy Tube (G-Tube)
A feeding tube can also be placed by making a small cut in the skin. A G-Tube goes through your stomach wall and is placed in your stomach. It is also known as a PEG tube.
Jejunostomy Tube (J-Tube)
A J-Tube is also placed by making a small cut in your abdomen. It goes through your stomach wall into the jejunum (the first part of your small intestine). It is also known as a PEJ or PEG-J Tube.
What Kind of Feeding Tube Do I Have?
I have had two kinds of feeding tubes. Initially, I had a nasojejunal, or NJ Tube. The tube was placed while I was under conscious sedation and are usually reserved for people who only need the tube for a short amount of time – a few weeks or months.
When we realized I would need one for a longer period of time, I had a PEG-J tube inserted. The PEG-J tube passes through the stomach into the jejunum. These can be used for months or years, or even the rest of your life. The plastic tubing inside your body usually needs to be replaced every 6 months.
Do Feeding Tubes Hurt?
Whether feeding tubes hurt or are uncomfortable is another question I get asked all the time. And the answer is honestly, yes. But they’re not supposed to.
For me, both the NJ Tube and PEG-J Tube were painful.
The NJ Tube hurt my throat. I only had it for 10 days before I couldn’t take it anymore and had it pulled out. It was also mentally difficult for me. The NG Tube is taped to the side of your face; everyone will see it. I avoided as many commitments as I could, including interviews and client meetings. I did not want to have to explain it to them.
With the PEG-J Tube, I was in extreme pain. There was a point where I could barely walk. The doctors don’t know why, and there was not much they could do about it. I spent weeks taking prescription painkillers, and still take them at times to deal with the pain. For some reason, I just have a lot of pain at the wound site. It gets significantly worse when I bend, lay down, or put pressure on the area.
What Lifestyle Changes Do You Have to Make With a Feeding Tube?
Having a feeding tube does require some lifestyle changes:
- Tube Care: The feeding bags and plastic tubing have to be cleaned out every day. Usually, I just flush them with water. Sometimes they require a deeper cleaning using vinegar or small amounts of dish soap. It takes about 20 minutes a day to set up, clean, and maintain the tube.
- Feeding Schedule: Most individuals can choose whether they feed during the day or at night. When I first got my feeding tube, I would run it during the day. However, I found the feeling and sensations of formula entering my body so unusual and uncomfortable, that I switched to feeding overnight. It also makes life a lot easier, as I can now go to work or partake in other activities during the day, rather than having to sit at home.
- Sleep: I have had to change the way I sleep. For the first six months, I could not sleep on my left side, as the pressure on the wound site was too painful. While I can now sleep on either side, I still can’t sleep on my stomach.
- Swimming: For the first six months, I could not go swimming. Now that I have switched to a low-profile tube, I can cover it with a waterproof bandage.
- Clothing: There are some types of clothing I can’t wear. Anything tight around my abdomen, like high-waisted pants or dresses with belts are too painful. I have to wear cross-body purses on my right side so they don’t rub against the tube.
Conclusion:
Adjusting to life with a feeding tube can be difficult – practically, physically, and mentally. It continues to affect me in all of these ways. I hope that by increasing awareness, we can create a more inclusive society. If you want more information about what it’s actually like having a feeding tube, and don’t want to read more brochures, please contact me or leave a comment below!
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