Thanks, I (still) hate it

mild gore
weight loss

Today is my tubiversary. It's been a whole year since my jejunostomy feeding tube was placed. I've lived an entire 365 days with a (plugged) hole in my belly. Congratulations to me. Well done. Etc etc.

How does one celebrate a milestone like this? Like, seriously? I can't think of any way to adequately or accurately commemorate the year. (Except—I guess—writing this.)

Perhaps it would be easier if a lot had changed in the last year, if I easily took to tube feeding and gained a decent amount of weight, strength, nourishment, and quality of life. I imagine I would be doing something akin to celebrating if I felt drastically better. Despite the sadness—the loss—that will always be a part of the narrative of my tube-fed adventures (lol k), I would be able to easily look down at this piece of plastic lodged in my small intestine and say, "You've made my life better."

But that's not where I'm at today.

Over the past twelve months: I've had feed tolerance issues and haven't been able to get enough formula in me to get enough calories without significant distention and pain; I've had a number of blockage-like flares that have sent me to the ER multiple times during a global pandemic (though these days I mostly know how to handle them at home); I've experienced so many new kinds of pain I didn't know existed, internal and external, with my body adapting to plastic where plastic should not be, and the irritation and infections that come with that; I've vomited a lot more than I did in the before times; I've grown far too familiar with the sight and feeling of my own bile on my skin, sometimes even having it pour out of my stoma as if it were a faucet; and probably other horrible things I can't recall in this moment.

Today, I weigh only two pounds more than I did when my tube was placed. My fatigue seems greater, though that might not be solely tube-related. I am likely still malnourished. My endurance and strength are shot. And I'm definitely in more day-to-day pain than I was before.

And yet, for now at least, we can still consider my tube a success. Because I'm still alive.

While nothing about my tube is easy (have I also mentioned how incredibly inconvenient it is? it is incredibly inconvenient), I would not be here without it. I would have starved to death. It was only a matter of time.

Having a feeding tube—in my experience—really fucking sucks. I hated it a couple of weeks in. I still hate it. I'm hopeful that, as time passes and I'm able to get better care post-pandemic, we may find remedies for some of the worst of my pain, we'll come up with ideas to help with some of the inconveniences, and my feed tolerance will improve.

I'm also trying to be ready for that to not be the case. It's easier said than done. I keep asking myself: is being alive—if life is painful, exhausting, and shitty feeling—enough long-term? I wish I could say yes for sure, but I honestly don't know.

It's admittedly unhelpful to even ask that question. I don't know what the future will bring and it's useless to dwell on the what-ifs. All I can know is what's true in this moment right now. I'll try to stick to that. To be present.

And if I'm to say anything to my tube-pierced small intestine on this, our first tubiversary, it's true I cannot thank it for making my life better. Because it hasn't. But I can thank it for allowing life to continue to be a thing. That's enough for today.