Time has ceased to make sense over the last two weeks. I know I’m not alone in that, though for me it has less to do with COVID-19 and everything to do with recovering from abdominal surgery and learning to live with a jejunostomy feeding tube.
Earlier today, when I realized it has already been two weeks I was relieved. I’ve had so much pain, nausea and vomiting, discomfort, bloating, and fatigue. I’ve even had my first infection (it was really scary, and the reason I was readmitted to the hospital only a day after I was discharged). I’m not yet up to my goal feeding rate and still not getting enough nutrition; each time we bump it up I start to feel sicker. I can only hope that the more time passes, the better I’ll feel.
And yet, I know healing isn’t linear. So we’ll see.
Two weeks isn’t hardly enough time to reflect. I’ve only actually looked at my tube site a few times, really, and every time it freaks me out. The plastic ring at the base of the tube is currently sewed to my skin and will be for a few months. It makes me feel like Frankenstein’s monster. The tube site leaks a bit—a bloody ooze. It’s gross. Most of the time it’s covered with gauze, though, so I don’t have to see it.
I don’t know how I’ll feel in a few weeks, months, years. I don’t even fully know how I feel now. Sad sometimes. Defeated as well. Scared? Frustrated, for sure.
What people want to hear is that I’m doing better, that I’m getting more energy and maybe even happy about things.
But right now, I’m not. Right now, I hate my tube. I hate that it’s both in and outside of me. I hate that I’m connected to a pump and bag full of formula 24/7. I hate that I can’t sleep on my side anymore and that I can’t currently twist to pop my back. I hate how distended my stomach is from the feed, and how it’s hard to stand up straight as a result. I hate that I can’t pick up my dog or cuddle him like I used to be able to. I feel like a medical device and not a person—and I hate it.
I know that I need my J tube. I know that it’s literally saving my life—and I do want to be alive. I still hate it. Both of those things can be true.