You know when you hear about something terrible that's happened to someone else and you're just like, "Oh wow whoa that's awful," and then there's a whisper of, "but that'll never happen to me," even though you have absolutely no promise or guarantee that it won't. And then—because life—it does happen to you.
Like when I was a teenager and heard all of the stories in health class of peoples' eating disorders controlling them and I was like, "No, I've got control here." I didn't. Or when I saw stabbings in action movies and subconsciously I was probably like, "Never gonna happen to me"—and then I stabbed through my hand and severed an artery and a nerve in a kitchen accident when I was 23.
This one's a doozy. In early 2019, Robbie and I were watching the second season of The Big Family Cooking Showdown on Netflix. (It's funny how memory works. I thought that this was much longer ago, but it turns out it was only released on Netflix in February of last year.) One of the teams is the Penman family, among them a young woman with a nasal feeding tube. At the time, I followed a small number of folks on Instagram with feeding tubes for gastroparesis and I guessed that's what she had (she does). I remember telling Robbie, "Gastroparesis is awful," and while I don't recall if I said it out loud or not, I definitely had the thought, "but that'll never happen to me."
Lol.
I do have some compassion for the naive early 2019 me. I didn't know I would spend the next several months struggling to eat, losing weight, and quickly losing ability before being diagnosed with gastroparesis in June. How could I have?
In the last eight months, I've tried almost every option medically available to me. First, there was erythromycin, an antibotic shown to stimulate motility. It didn't help my early satiety, nausea, or pain, but it did decrease my appetite even more. It also made me itchy. Then, I got a Botox injection in my pyloric sphincter. It temporarily numbed the gnawing pain under my left rib cage but also increased my nausea. After that, I tried Reglan—even though it comes with a risk of tardive dyskinesia—and while it helped with my early satiety, it also increased my anxiety tenfold.
Most recently I've been trying Motegrity—and without getting into the details, I can tell you it's been shitty. Domperidone, a drug that isn't FDA-approved but is available through research facilities (like my gastroenterologist's office), has helped people with their symptoms in clinical trials. It also comes with a huge risk of cardiac failure. Because of my POTS and another as-of-yet not-understood arrhythmia, it's not an option for me.
And yet, despite all of this medical intervention, I've continued to lose weight and ability—and recent blood testing shows I'm deficient in some important vitamins.
I'm also miserable. I'm struggling to find joy despite my losses. I've had to mourn so much, it's often hard to understand what's left. That may sound self-pitying. It feels like it sounds self-pitying. But it's also the truth. There have been a lot of moments lately where I've questioned whether I want to be alive. If I had to do this for 10 more years, I've wondered, would it be worth it? The answer—yes—isn't always immediately obvious.
"Treatment" for gastroparesis isn't graded solely on weight management or nutrition, but also by quality of life. Mine's poor.
I write all of this not to explain to you or anyone else why I'm in the situation I'm currently in. Frankly, it's not any of your business. Instead, it's to help me comprehend where I'm at, to help make sense of the decisions I've very recently had to make. Because this week, after conversations with my dietitian and my gastroenterologist, I've decided to move forward with the placement of a jejunostomy (J) feeding tube.
When I was first diagnosed, I viewed tube feeding as a last resort. I still do. I think it's important to try all other options available before pursuing something as invasive as the surgical placement of a feeding tube. My viewpoint has matured a bit since last June, however. Back then, I saw a feeding tube solely as a way to avoid starving to death. Now, I'm beginning to realize it's more than that.
On Instagram and in forums, I've read stories of people "getting their lives back" from tube feeding. People who were previously unable to do much are now doing a lot—running 5ks, hitting the gym, traveling, hiking, swimming in the ocean, etc. Things aren't perfect, sure; they're still chronically ill. Some of their illnesses have progressed. There's also a new reality that comes with tube feeding—like being hooked up to a pump giving formula most of the day, and dealing with pain, leakage, and potential infections. But for many of them, their tubes have given more than they've taken. My dietitian has worked closely with tube fed folks before and tells me that for most, it's a really helpful thing.
I'm realizing that a feeding tube might not just be something that will help keep me alive; it might also be something that gives me life.
I'm at once hopeful, skeptical, and terrified. I'm hopeful that I may soon be able to feel more human. I'm skeptical because I have Scorpio in my chart and I've been burned before. I'm terrified because having a hole in one's small intestine is A Lot.
My doctor and my dietitian both separately started mentioning tube feeding to me in December. I think they were each trying to get me more comfortable with the idea before fully recommending it. Even though this has been on my mind for the last few months, I've told very few people. I've kept it mostly to myself—out of fear, I think, and mostly shame.
I worried that people would think I was attention-seeking or going for an invasive option too quickly. Even though that's very obviously my internalized ableism talking and I rationally know it's not true, I still have that worry. I worried that I'm not actually sick enough to need a feeding tube. My mom told me yesterday I'm the only who's had that thought and when I repeated the worry to Robbie last night he laughed. "You've lost a lot of weight," he later told me seriously. Both my mom and my therapist have asked how I would feel if someone else were in my situation. I wouldn't for a moment think they weren't sick enough. "See," they both said. It's probably time I stop gaslighting myself.
There are still a lot of things I don't know. I don't know when I'll be getting my J tube. I'm still waiting to hear back about scheduling an appointment to meet my future surgeon. I don't know how it will feel. I don't know how it will change my energy levels or my ability. I don't know how it will impact my body image. I don't know how much it will cost or how much insurance will cover ongoing.
What I do know is I'm making the best decision I can with the information I have right now—and that, even if it feels like it sometimes, I'm not in this alone. Telling more friends and chosen family has helped remind me of that. This all feels very surreal and scary and weird—because I can't believe this is happening to me—and I'm so grateful to have the support I do to help me through it. I don't know that I'd still be here without it.
If you or someone you know is struggling with suicidal thoughts or ideation, please know there's help and support available to you. The National Suicide Prevention Lifeline can provide free, confidential support and is available 24/7 at 1-800-273-8255 and on their website.
