Mildly disjointed thoughts about the removal of my feeding tube

general descriptions of pain and illness
weight loss

In March 2021, I “celebrated” my one-year anniversary with my jejunal feeding tube. Celebrated is in quotes here because it wasn’t necessarily a joyous occasion. 

Yes, that piece of plastic kept me alive for an entire year that I certainly wouldn’t have survived otherwise. And also, survival came with daily pain and discomfort from bile leakage and tube movement, as well as seriously awful stoma infections. Plus, after an entire year with the tube, I still hadn’t regained any of the weight I’d lost from gastroparesis, and my physical ability and quality of life were at ATLs (all time low, not Atlanta (nested parenthetical here to confirm that yes, this joke is a small reference to Bo Burnham’s Inside)).

But survival is survival, I suppose. In the grand scheme of things, the tube was doing its job. 

Tomorrow, I’m celebrating—and truly celebrating—a different occasion. One month ago today, my feeding tube was removed. For those who don’t understand how all this stuff works (and I’m guessing that’s most of you, because from my experience thus far the only people who do understand are those who have gone through it first or second-hand themselves), tube removal is a really good thing. It’s like a really really good thing. Kind of the best thing, really. 

Basically: my doctor deemed me well enough to get it taken out because I’d been eating solely by mouth since mid-July. Since July, I’ve regained almost all of the weight I lost from gastroparesis. I started climbing again in September and I’ve been walking more. I’m doing really well. So in November, my doctor, my dietitian, and I agreed it was time for the tube to come out.

The tube removal itself was oddly anti-climactic. Getting it placed was such a big deal: abdominal surgery, a hospital stay, big recovery time, all of that. Getting it out was a 15-minute office visit where my doctor deflated the internal balloon holding the tube in place, pulled it out, taped some gauze on me, then sent me on my way. The stoma mostly closed up on its own within two or three days. I’d expected to have a really gross, potentially painful, bile leakage-filled few days, but there was hardly any leakage and no pain whatsoever. I was back to climbing in just a few days. 

Leading up to the removal and just after, friends asked me what I wanted to do to celebrate. I didn’t have an answer ready. One friend suggested I host a party where everyone was required to take a shot of my tube-feeding formula. I joked that people would probably get sick, but it was fine if they vomited because I still have a ton of emesis bags. 

I thought about the things I haven’t really been able to do: take a bath (technically allowed, but I had too many infection issues), swim in lakes and rivers, eat meals with friends, wear high-waisted and tight clothing. I don’t have a bathtub in my apartment and it’s the wrong time of year to take a dip in a river. That said, a couple weekends ago, I did buy new high-waisted jeans. I also ordered some new leggings. 

The obvious choice for a real celebration is a dinner party. Even though it’s been several months now, eating meals still feels new. My spouse and I don’t even reliably eat our meals together yet. We’re still getting used to it; it’s an adjustment.

I’ve had a few meals with people now, and it still feels like a novelty. I’m wondering when it will start to feel normal again. I’m still not even sure if I’m eating a “normal amount” in a sitting or if the way I feel after eating is normal. I do still have gastroparesis after all; my symptoms are just milder.

We're also, of course, in the midst of a once-again worsening pandemic. So any major dinner party celebration will just have to wait at this point. 

I feel like I’m supposed to have some profound reflections or feelings or whatever about what my last few years of worsening and then improving health. I feel like I should have clear learnings or some greater understanding of what’s important in life. 

I suppose in some ways I do. I’ve learned that life is short and living in the present means seeking out joy now, rather than waiting for joy in some far-off future that may never happen. I’ve learned that my job is just a thing I do to make money and have health insurance so I can spend the rest of my time doing the things I actually want to do. I’ve picked up new hobbies I would have felt too self-conscious to do before (because it’s hard for me to let myself be bad at things and still enjoy them), like ceramics and drawing. 

I don’t have any greater reflection right now about the last few years. In some ways, the worsening of health feels like it never happened. As if I dreamt (nightmared) it. As if I fell asleep and just woke up. As if my life was a lazy plot device. I think the pandemic happening at the same time as all of this likely exacerbates that feeling. 

But also I know it did happen. I have the physical scars (and mental ones) to prove it. Perhaps it’s too soon to have any major reflections. Or maybe I’m expecting too much from myself. It wouldn’t be the first time.

The one feeling I can’t shake is one I’m not super proud of: it’s like I’m waiting for the other shoe to drop. Things are going well, so of course something bad must be right around the corner. I’m not proud of this because it stems from the idea that I don’t deserve to have good things happen to me. And also maybe it comes from some sort of belief that I’m to blame for the bad things that do happen. Both of these things are untrue. I know they’re untrue. But that voice just keeps popping up. 

My current method of handling it—which I think is the only way to handle it— is to acknowledge the feeling when it arises and then move on. There’s no point dwelling.

A year ago, I wasn’t sure I’d make it to see 40. If things keep going as they are today (barring any accidents), I don’t see why I wouldn’t. Time is a bit of an illusion in a lot of ways. A year can at once feel both very long and very short. We can never really know how much time we have left. 

And yet, it sort of feels like I’ve somehow unlocked more of it (typing this makes the superstitious side of me hellishly nervous, but I’m just going to breathe through it). Now that I’m no longer at immediate risk of literal starvation, it sort of feels like the delta between me and death has widened. 

I’m not sure what to do with this. I’m not sure there’s anything to do with it. It seems mildly at odds with living in the present. But maybe it doesn’t need to be. Maybe I can make plans for the future without sacrificing joy in the present. Maybe it’s about balance. I don’t know. I think, for now, I’ll just keep taking things one day at a time.