Living with IBD and a feeding tube doesn't define you!

February 6-10, 2023 is Feeding Tube Awareness Week! I think it’s very clever to have something like this because it seems like most people are ashamed or feel insecure when having a feeding tube; it shouldn’t be like that. A feeding tube isn’t an embarrassing thing to have. We should be grateful to have such a thing when we need it, so we don’t get even more sick.

I have my own experience with a feeding tube (a nasogastric or NG-tube). It was definitely an experience I’m thankful I went through, and for me the struggles were worth it. There are definitely pros and cons to having a feeding tube. Not every day will be great, but I believe we can be grateful for the struggles that come with a blessing.

When I was 13, I got my first NG-tube, and the experience wasn’t pleasant. But the end result I had a year and a half later was definitely worth it. I did NG tube feeding for three months strictly (this is also called Exclusive Enteral Nutrition or EEN). During this time, I couldn’t eat any solid foods because my bowels were very inflamed and needed a break from digesting solid foods.

Here are three things I learned about maintaining my NG tube:

💚 Tip 1: If you are getting a feeding tube that goes in through the nose, when the tube is entering the throat you have to focus on swallowing so it goes down smoother.

💙 Tip 2: If you are using an NG-tube, remember after EVERY tube feeding to flush it instantly with warm water. This is very important because if you don’t flush it instantly, and allow it to just sit in the tube and cake up, it will get clogged and it will be much harder to flush it later.

Now if you are like me, forgetting to flush it and it gets clogged, I’ve got a solution for that.

💚 Tip 3: If your tube gets clogged and hot water won’t go through then try Coke. The acids from the soda eat away the leftover shake in the tube and it unclogs it pretty well.

In my experience, it’s better to flush the tube right away so you don’t have to end up using Coke and risk ingesting some of the soda in your tube. As a person living with IBD, soda is definitely one of the things I avoid.

Living with IBD and a feeding tube doesn’t define who you are!

Another thing I want to cover quickly is feeling insecure about having a feeding tube. Your feeding tube doesn’t define who you are, it doesn’t make you any less beautiful. You are still the same person you were before the feeding tube. People likely won’t know what is actually going on and why you need to have a feeding tube, they just see the surface. So, yes, people might say stuff, or you might be stared at but don’t let that get to you because you are perfect the way you are. You matter and you are worth it.

I know it feels hard sometimes, so find a community that understands, read stories from others who use feeding tubes too, and check out resources for patients by patients that have info and insights on tube feeding.

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Get #InTheLOOP with more posts about Feeding Tubes on the ICN blog >>

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