Skip to main content

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)


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


Post a Comment

Popular posts from this blog

Feeding Tube Awareness Week Day 1

Today is the beginning of feeding tube awareness week! A year ago if you had told me I would be feeding tube dependent in less than 6 months I would be feeding tube dependent I would say that's crazy. Anyways here I am and its not super scary like one might think.

Day 1: Talk about the reasons you, your child, or your loved one is tube fed. Raise awareness of the medical conditions that made tube feeding necessary.
I am tube fed because I have gastroparesis and dysautonomia.
Gastroparesis: Delayed stomach emptying, which means I can not tolerate normal amounts of food because it doesn't leave my stomach as fast as it should. The symptoms include feeling full, nausea, and vomiting (there are many others, these are just the ones I deal with the most). Gastroparesis is caused by nerves not firing and telling the stomach to empty. Due to gastroparesis I can only consume a few hundred calories a day so I receive most of them through my tube that goes into my small intestines instead…

The Swollen Wrist

This morning I woke up to a red painful swollen wrist. My right wrist was not happy or useable for the better part of the morning. Of course my mom wanted to make a rheumatologist appointment for this week but I really did not think it is worth it. Since I am now in the 2 week period before my hip surgery I can not take anything but Tylenol anyway (no voltaren or fancy cream), so there is not a whole lot that can be done. We finally settled on me going to my GP (for the 2nd time in one week as I had a pre-op appointment with him on Monday), and I took a picture so I can show my rheumy at my next appointment.

I managed to get an appointment at 11AM because my GP was in the office this Saturday. By the time of the appointment my wrist looked pretty normal, although I had the picture so he could see something was up. He had it x-rayed just to rule out any issues non rheumatology related, and as we both guessed the x-rays came out normal.

I was left with the advise to call me rheumy Monda…

Cellcept, Methotrexate, and Rituxan, Oh My!

So while it has only been 3 months since I last wrote instead of 6 months, a lot of things have happened with my health. After student teaching I refuse to be on prednisone for a little while. That didn't go so well and there was a month full of ulcers. I couldn't talk, I couldn't eat, I couldn't sleep much. I was not a happy or pleasant human being, which is all the things I hate about being on it. At this point they were running down my throat and I could not swallow. So after a month of this it was time for camp and that meant I needed to be able to talk without wanting to cry and I gave in to the steroids and have been on the highest daily dose yet ever since. Also Behcet's now seems to be the responsible disease for at least this mess.

Meanwhile my ability to swallow liquids has also struggled. Most of the time it was pretty solid but more times than I would like I cannot seem to get the coordination down and it seems to go down the wrong pipe and cause a lot …