A GPer’s Guide to Surviving the Holidays When You Can’t Eat

The weeks leading up to the holidays are filled with shop ‘til you drop days, nights driving around to see light displays, and afternoons curled up on the couch watching Elf for the fifth time in a row (okay, maybe that last one is just me). But for many of us with gastroparesis, when the actual day comes we’re stuck in a weird headspace of joyful holiday cheer and painful grief. We want to enjoy the holiday, but there’s no denying it’s not the same when you can’t partake in one of the biggest parts of the season: eating.

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You Don’t Have To Be Underweight To Need A Feeding Tube

Two weeks ago, I got a GJ feeding tube placed once again. This is my second go-around with a tube, as I previously had one in 2014 for gastroparesis. Last time, I was stubborn and afraid. I put off on getting the feeding tube even though I was terribly underweight, was managing about 1 ensure a day, and could barely make it out of bed. This time around I saw the signs of malnutrition and I was proactive. After a couple months of limited oral intake (about 2 ensures and a little butternut squash soup) I contacted my specialist at Johns Hopkins.

By my appointment date, I had already lost 15 pounds, but it wasn’t anything alarming because I was still in my healthy weight range. My GI always wants me between 130-150 lbs and I was at the higher end of that scale when I first stopped tolerating my safe foods back at the end of August. Lucky for me, it gave me some wiggle room and I wasn’t all that worried about losing too much weight. But the affects of poor nutrition had already set in. I was extremely fatigued, terribly weak, and I could feel my brain getting what I can only describe as “fuzzy”. Everyone knows what hunger is like, but few know what it’s like to actually begin to starve. It’s not just an uncomfortable feeling in your stomach, but ravishes your whole body and soul. It’s truly an experience I wouldn’t wish upon my worst enemies, not even Donald Trump.

Within a month of trying hail marys and failing miserably, I lost another 5 pounds and sat right at 130 lbs. While it was still a healthy weight for me, I was feeling anything but healthy. Now in addition to fatigue, weakness, and brain fog, my eyes were sunken in like I hadn’t slept for weeks, I was emotionally a wreck, and my body was clearly shutting down. I called my GI for an emergency appointment, as I knew I couldn’t wait until December and we agreed I needed a GJ feeding tube yet again.

For the first time in months, I felt relief. I was going to get help. I was going to get the nutrition my body was so badly craving. I went into surgery weighing in at a healthy 130 lbs but I wasn’t healthy at all. I was barely hanging in. Some people were shocked when they learned I’d be having another feeding tube placed. “But you look so healthy,” they said. What they really meant was, “but you don’t look like you’re starving and malnourished.” And they were right, but I wasn’t willing to wait and let it get to that point before I did something. I wasn’t going to let myself continue to lack nutrition all because my weight was still in a healthy range. I wasn’t willing to sacrifice my health in order to “look” like I need a feeding tube.

So here I am, 130 lbs with a feeding tube in my abdomen. You can’t see my ribs, my fat rolls over my stoma site when I sit down, and if I wasn’t hooked up to my feeds all day, you wouldn’t even know I was slowly starving to death just two short weeks ago. There’s no weight requirement for malnutrition, no right way to look in order to need a feeding tube. Remember, not all illnesses are visible.