Feeding Tube Awareness Week 2019

Feeding Tube (fēd-ĭng to̅o̅b) noun. A medical device used to provide nutrition to people who cannot obtain nutrition by mouth, are unable to swallow safely, or need nutritional supplementation.

 

It’s May of 2013 and I’m awoken by a knock on my hospital room door. I’m half asleep after another long and painful night, but the look on my doctor’ face is enough to wake me up. I know what he will say, and already tears are welling in my eyes.

“I know this isn’t what you want to hear,” he says as he sits on the edge of my bed, “but we have exhausted all of our options. You’ve lost nearly 35 pounds and you’re severely malnourished.”

I don’t need him to tell me that. The weight had fallen off me faster than I’d thought possible. I was exhausted all the time. My bones ached. My brain was in a constant fog. I was so weak I could hardly walk. I hadn’t been able to eat without getting sick for nearly three months at that point. I had trialed half a dozen medications, undergone countless tests and tried every diet imaginable, yet no treatment had worked and I was still undiagnosed. I had seen it coming, but hearing it out loud made it very real, and honestly quite terrifying:

“You’re going to need a feeding tube.”

 

That was my first feeding tube, but wouldn’t be my last. Fast forward 5 ½ years and I’ve been living with a feeding tube since then, minus a month where we tried to see if I could manage without it, a test I failed miserably. I had nonsurgical tubes for the first year and a half before finally having a permanent tube placed. It was strange at first, but now it’s just a part of my daily routine, no different than brushing my teeth or making my bed. Now at this point, I’m sure you have a lot of questions, and I’m here to answer them because it’s feeding tube awareness week! Ok, technically today is the last day, but better late than never. This week is about showing the world what feeding tubes are and sharing the stories of those living with them. There is a largely negative public opinion on feeding tubes, and I’m here to show you that they aren’t bad – in fact, they are the reason that I and many other people are alive today!

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A selfie of Charlotte wearing a black t-shirt with white lettering that says “super tubie” and has a red heart.

So what is a feeding tube? How do they work? Why do people need them? Why are there different types of feeding tubes? Can you still eat and drink? Will you have it forever? There are about a million questions you could ask about feeding tubes, so I’m going to try to answer as many as I can, but if I miss yours, please leave it in the comments here or ask me on Twitter!

A feeding tube, as defined above, is a medical device used to provide nutrition to a person who is unable to do so. There are dozens of medical conditions that may require or benefit from the use of a feeding tube. Problems with swallowing, an inability to gain weight (often called failure to thrive), severe food allergies, functional or structural issues in the digestive tract and much more. Some people have them temporarily, while others have them for many years or for their entire life.

I personally have a feeding tube due to gastroparesis and pan-intestinal dysmotility; essentially my stomach and intestines are paralyzed. This is a result of my two primary conditions, Ehlers-Danlos Syndrome and pandysautonomia – nerve damage and structural issues inhibit the contractions that move food through the gut (peristalsis) and as a result I am unable to eat. I still get hungry, but if I eat or drink I am faced with nausea, vomiting, distention, and severe abdominal pain. Right now I am able to have small amounts of liquids as long as I am careful about how much I drink and take medications to alleviate the symptoms. On really good days I can sometimes manage things like mashed potatoes or rice, but even these make me sick. My need for a feeding tube is complicated, but without mine I would be dead – I am unable to nourish or hydrate myself without it.  It was hard to get used to at first and it is likely I will need it for the rest of my life, but I am incredibly thankful for my tube.

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An old photo of Charlotte with long hair, wearing a white and gray striped sweater. She has a nasal feeding tube on the left side of her face.

There are many different types of feeding tubes, and the type of tube that someone has depends on why they need it. The two main groups of feeding tubes are nasal and surgical tubes. Nasal tubes, as the name implies are tubes that go through the nose, down the esophagus and into either the stomach (nasogastric or NG tubes) or the small intestine (nasojejunal or NJ tubes). These types of tubes are typically used for those who need tubes temporarily, or to determine if someone can tolerate tube feeds before placing a surgical tube. Surgical tubes are ones that are placed through the abdominal wall and are used for people who need tube feeds for long or indefinite periods of time. These tubes can either be placed directly into the stomach (gastrostomy or G-tube), the small intestine (jejunostomy or J-tube) or be placed in the stomach but have a secondary internal tube that is placed into the small intestine (gastro-jejunal or GJ-tube).

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A grayscale photo of Charlotte standing, wearing a striped sports bar and leggings. Her GJ-tube is visible along with her central line, and she is holding an IV pole with her tube feeds and IV fluids.

Some people are able to tolerate feeds in the stomach, while others (like myself) need to bypass the stomach and thus have tubes placed in the small intestine. Tubes with access to the stomach can also be used for decompression, also called venting or draining. This means a bag or syringe can be connected and allow stomach contents to drain out to reduce nausea and vomiting. It might sound gross, but it can drastically improve someone’s quality of life. The advantage of the GJ-tube (the kind of tube I have currently) is that it allows the feeds to bypass the stomach through the J portion of the tube and venting through the G portion simultaneously. Again, the type of tube someone has and what they use it for varies a lot depending on the condition the tube is being used to treat.

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A picture of a tube feeding pump and a bag with formula on a white background.

I have mentioned the word “feeds” several times, so I should probably explain it. “Feeds” is a term used to describe the formula that is put through the feeding tube to provide nourishment. There are dozens of formulas, again catered to the condition the tube is being used to treat. They vary in calorie content and nutrient composition, and are delivered in different ways. Some people do boluses, meaning they put a large amount of formula through the tube in a short amount of time. Other people, often those who have motility issues (paralysis or slowing of the digestive tract), can’t tolerate high volumes, so will instead use a pump to deliver the formula. The rate the feeds are delivered and the time a person has to be hooked up to the feeds also varies. In my situation, I am hooked to the pump 24/7 and the formula is delivered at a very slow rate because it is all my body can tolerate. Now

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A picture of Charlotte sitting in her wheelchair, with her tube feed and IV fluid lines clipped to her side.

you might think, how are you supposed to live and do things when you’re hooked to this pump all the time? While I use an IV pole to hold it at night, the pumps and feeds are very easily put into a backpack so I can carry on with my day. I have essentially been attached to a backpack for the last 5 ½ years and there’s not much I can’t do.

There are many misconceptions about feeding tubes and often negative views, but I hope you can come away from this post not only knowing more about them, but recognizing that they are the lifeline for many people and are actually a really positive thing. Sure it can be difficult and sometimes annoying to have one, but because of my tube I am able to continue doing what I love. This is but a brief overview of feeding tubes, but I will happily answer any questions you have!

 

4 thoughts on “Feeding Tube Awareness Week 2019

  1. Hi Charlotte, I learn a lot from your posts. I really appreciate your blog, thank you for being so open and sharing with us.

    Like

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