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The Love/Hate Relationship with the NJ Tube

My NJ tube and I have a complicated relationship. It is really easy to hate. After all who wants a long tube shoved through there nose, down their throat, all the way into their small intestines? Not me for sure. Its a nag, uncomfortable at times, and its a lot of effort. But I am getting 1,800 calories a day! I know that may not sound like a big deal but it is huge!

Yep, that's me filling up my formula bag while standing on line for a Passenger concert in the middle of Central Park.
I don't talk about calories on here to often, but I will try to put things in perspective. So most food labels go on the assumption an average person should eat 2,000 calories a day. According to the CHOP RD (registered dietitian)  I personally a supposed to get 1,800. When I was first diagnosed with Celiac I had a feeling I was not getting enough, I just had no appetite. When I went to see the campus RD she had me keep a food journal for a few weeks. I was getting 1,000-1,400 calories a day usually. She advised me to have two snacks a day. Simple solution, even though I was not hungry it was easy to eat and did not add any symptoms.

Then all my gastroparesis symptoms began. I struggled to eat, I would have half portions at meals and no snacks and still feel super full and throw up on occasion. Obviously my calorie intake quickly dropped and I had to start drinking Ensure to keep myself from losing weight. Once I started taking erythromycin I could eat again.

Even though I thought I was eating enough at the beginning of the summer I lost a few pounds and had to eat something every two hours and drink Ensure everyday. Slowly I was tolerating less and less food at once, so I was eating every two hours but not much. Before I knew it I was only getting in 300-500 calories a day and throwing up. The erythromycin had stopped working.

Now that I have gone on my rant about my caloric intake let me explain what your body feels like when you are getting 300-500 calories a day. Its like never getting more than 3 hours a sleep, having a fever, and being dehydrated all at once (okay so maybe the dehydration part is because I WAS dehydrated). There was nothing pretty about it. By the time I was admitted to the hospital I could not stand for more then a couple minutes and constantly felt like I was going to pass out.
Sitting on a blanket at concert and I notice all these things a perfectly laid out for a picture that sums up my life (Lace Toms, Gatorade, and my Feed Bag)

Thanks to my NJ tube I do not feel the way I just described anymore. I am now a fully functioning human being again (well if you exclude my stomach that is).While I hate the fact I am unable to eat more then 300 calories (400 on a super good day) without getting sick, lugging around formula and a pump in a backpack all day, and the fun fact I have an IV pole in my room now, I LOVE how I feel! And with out it I definitely would not have been able to go to a Passenger concert in Central Park!
Home is where the IV pole is...

Me and My friend at the  concert! (I think I rock the NJ tube)

Comments

  1. I am so so glad you are feeling better with the tube Joan!! Go you!

    ReplyDelete

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