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To the Young Adult Who Got a Feeding Tube Around the Holidays

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To the young adult who got a feeding tube around the holidays,

Right now, you’re most likely pretty sad. While you were in the hospital, the nurses made it all look so easy, but now you are home and it’s a time of year where it feels like everything revolves around food. There are tubes and syringes to keep track of, a pump and backpack to figure out, and the constant guessing game of trying to figure out what the heck is on your shirt.

If I said it would be easy, I would be lying. I struggled a lot on my first holiday as an exclusively tube fed person. Through surgery, I no longer require tube feeds, but since holidays are upon us, I have decided to share some of the wisdom I gained in my experience. You may need this for just a year or so until another solution can be worked out, or it may be a lifetime, but regardless, you are stronger than you can imagine right now.

The first few months are the hardest. Those months get harder during a time of the year that should be joyous. You may be embarrassed and not want to take part in holiday activities — I beg you not to do that. Get out there to whatever extent your health lets you. Make the tube feeds part of your life, but do not let them control your life. In just a few short months, you will likely feel as if that tube was a body part you were born with. You will be able to hook yourself up half-asleep and you may even almost forget it’s there.

You will probably be your own worst enemy. Do not let self-doubt creep up on you. This isn’t the end of your life, it’s just a “new normal” you will adjust to. Try not to dwell on what could go wrong. Chances are, some of those things will happen, no matter if you worry about it or not. The tube will probably get pulled out at some point, and it may even get infected. You just have to take things one day at a time.

It is easy to be humiliated by strange questions or stares at holiday events and family parties. Not being able to eat made for some uncomfortable moments for me, and it continues to do so as I am still under a huge list of dietary restrictions. You will learn to shake it off. Answer as many or as few questions as you feel comfortable with. It is your story and your choice who to share it with and how you share it. Never forget that.

Lastly, please just take time to breathe. The holidays are a short time of each year, and no matter how much you’d rather be diving into a pile of mashed potatoes face first instead of sitting on the kitchen table at midnight trying to unclog your tube, your health is a lifetime learning journey. I believe in the long run, it will bring as many blessings as it does inconveniences.

You will get through this.


a former Tubie

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Originally published: November 28, 2016
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