Feeding Tube, Part 2: Dealing With Emergencies

Yesterday I talked about why I have a feeding tube, and how great it’s been for my life.  However, in the interest of honesty, I wanted to write a follow-up post about the downsides to having a feeding tube – about what it’s like when I have a feeding tube “emergency.”

The human body is a crazy and fascinating thing. My feeding tube sits in a hole in my stomach, and is held in place by a little balloon that is inflated on the inside of my stomach. But balloons can break, and when it does, there’s nothing left keeping the feeding tube from slipping right out. And the craziest part of all is that if the feeding tube comes all the way out, the little hole in my stomach can start closing back up in an hour! That would mean that I’d need another surgery to get a new feeding tube placed, which I definitely do not want.

The first time that my feeding tube balloon broke, I was in New York, seeing Hamilton and Oh, Hello On Broadway. I had just come back to my hotel room after meeting Nick Kroll and John Mulaney, so I was having a great night and feeling pretty fantastic. I was eating a burger and milkshake I had picked up from Shake Shack, so again – feeling great. As I was changing into my PJs, though, I realized that the bottom of my shirt was soaked (the balloon is filled with water/saline), and my feeding tube was sticking way out of my stomach.

I completely PANICKED. I pushed it back in really quickly, put a Kleenex over it, and put about 100 pieces of tape on it to keep it from coming out. I called the on-call physician at my gastroenterologist, who calmed me down a little bit by telling me that since it had been in for 3 years, the hole wouldn’t close with the feeding tube still inside it, and told me that if it did come out somehow, I could just put it pack in and it would be ok. I was allowed to use it overnight still, but at a much slower rate than usual. That meant I got a lot less calories than usual, which made for a really rough drive home from New York to Pittsburgh. Luckily, the hospital was able to fit me in for an emergency replacement of my feeding tube the next morning, which was surprisingly quick and easy.

Then, over this past weekend, almost a year to the day from last time, I felt the same familiar rush of liquid and soaking of my shirt. I was happy to be home this time, at least, but I was no less panicked. After a few hours in the ER, I found out that the balloon wasn’t completely broken, but had deflated a bit and wasn’t holding the feeding tube tightly into my stomach. They were going to put in a new feeding tube anyway, to be safe, but the hospital didn’t have any of my “size” of feeding tube. So instead, they refilled it, took an x-ray to make sure it was in the right place, and sent me on my way. While it was actually a relatively quick ER visit, it still basically ended up being my entire day.

Things like this, that happen with no warning and are completely out of my control, are the frustrating parts of my feeding tube. The positives absolutely outweigh the negatives, though, and I’ll take a day spent at the ER over being too tired to live my own life anytime.

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