Sunday, July 15, 2012

Enteral Feeds: A Young Adult's Perspective

No matter how you jazz it up, it isn't cool.

No matter how innovative you are at concealing the fact that you are hooked to a machine that slowly delivers cows milk based formula into your GI tract, The fact remains that you are-indeed-in your young adulthood, strapped to a machine that delivers that life into you.

Or so I thought. But that wasn't all she wrote. At least not in my life.

Enteral (tube) feedings were a very difficult adjustment. I was 19 years old when I was put on them and there were a lot of things I did not know. I wish back then that I'd come across a common sense blog post on how to get used to this major life adjustment. So today, I am going to make such a blog post :)

Know that this isn't the the end of your life. In fact, for most of you, this will enable you to enjoy life to the max. Whether if it is for months or a lifetime, this IS doable and will become second nature in no time at all.

I will be addressing enteral feedings via a feeding pump on a continuous 24 hour schedule because that's where my experience is. But there are several methods to enteral feedings, so know this is not an exhaustive guide. This is just my experience.

First is the feeding pump itself. You need to find a portable pump that you can live with day in and day out. At the time of this post, the two most popular portable enteral feeding pumps available in the United States are the Covidian Kangaroo Joey and the Moog EnteraLite Infinity. I've used both and my personal preference was the Infinity. I can go into more detail as to why in a later post but that is for another time.

Once you've been given your pump and your feeding schedule, it's time to get the creative juices flowing. First of all, unless you have a specific need to use the backpack your home health company gave you, just ditch it. Lugging around that ugly backpack when the rest of your outfit is cute is just going to rag on your self esteem. There are plenty of super cute backpacks, messenger bags, and oversize purses out there that you can use to tote around your supplies. The pink backpack in the picture below I got for $7 at Wal Mart. The messenger bags also came from Wal Mart. But if I had the financial resources, www.roxy.com has really cute bags for outlandish prices :)

Ok, so now you have a cute bag and...you still feel like a freakshow. This is where you need to understand that this is NOT because there is anything wrong with you. People often gawk or ask ridiculous questions when they don't understand or are afraid of something. By the same token, a lot of this hinges on your attitude. At first all this is new and scary, but as you go along, make it your goal to be unapologetically yourself...just like you were before enteral feedings. You never had that to begin with? That's cool. This would be a good time to cultivate that attitude. People will continue to treat you as if you are sick and fragile as long as you let them.

So you have a cute bag(or in my case bags, purses, and messenger bags) you've got some confidence going and...oops! The adapter to your feeding bag slips out of your feeding tube or the feeding bag pops open. Are you mortified? Yes? Laugh it off. Have I lost my mind? Why on earth would this be funny? Remember, I got a cute bag to accentuate my sense of style, I'm covered in puke smelling formula and I'm...laughing?

Why?

Because we all take ourselves too seriously. That and...in the life of a tube feeder, this is going to happen. Not might. Not maybe. It will. Guaranteed! So are you going to cry about it every time it happens? Didn't your mom tell you not to cry over spilt milk (or formula?).

Now here comes the question of other people. Because other people eat food and you may a little or not at all. How do you make this not awkward?

Remember that attitude to cultivated about being yourself? This comes in handy here. Make eye contact! Be honest! You have to take a medical condition that limits or eliminates your ability to eat. Don't apologize and don't be ashamed. If pressed for an explanation there is no need for grueling details, but explain a little if you are comfortable. Or not at all. That is your right.

What about all these other nasty emotions brewing in your chest? You've followed all these steps, yet you still feel angry, bitter, sad, and everything in between. Is there something wrong with you?

The answer to this is no. This is a life altering adjustment. Holidays and dinners out are going to be difficult. It will get easier as time passes, but also know that in these moments it is ok to take care of yourself. While this doesn't mean isolating, if it means not joining the family at the table during the meal at Thanksgiving then do it! This is your life and you need to take the necessary steps to take care of you. If you don't take care of you, no one else will. And all those icky feelings will boil over at the most inopportune time.

And finally, I will reiterate the support network, namely friends and family. During a major adjustment you NEED support. Suffering in silence is unnecessary! Suffering is unnecessary! Take one step at a time and of course, for any other questions feel free to leave a comment below :)

1 comment:

  1. I'm so greatful, ED never took me to that point!

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