infusion life

05 Feb, 2025

So around two years ago I was diagnosed with ulcerative colitis, an autoimmune disorder where the body attacks the large intestine. It was something I had probably been dealing with for much longer, but late 2022 I ended up having bloody diarrhea for a month non-stop, causing me to spend the first week and a half or so of January in the hospital. It's been a whirlwind of ups and downs ever since.

Late last year I ended up in another downturn. I had had another downturn around the holidays the year before last, and what had worked that time didn't work again, so I spent another week in mid-December in the hospital. Following that, my doctor stepped me up in medicine intensity. Before, I had just been taking mesalamine, a delayed release pill that targets certain pathways in the colon to mitigate the immune response, as well as azathioprine, a general immunosuppressant.

Now, every few weeks, I end up going to a local pharmacy and receiving an infusion of a medicine called infliximab, a derivative of mouse antibodies that targets the cells in the immune system to try and get them to calm down and not attack my own colon. I've had two infusion appointments so far, and they take about two to two and a half hours.

The pharmacy has a big room with a bunch of recliners in it, so I at least get to be pretty comfortable while I wait. I also bring my Switch, and I've been playing Dragon Quest III HD-2D Remake while I sit around. It's a really nice distraction game in terms of looking really good on Switch, having pleasant music, and being generally fun to grind in as I wait.

Thus far it seems to be helping with minimal side effects, knock on wood. The first infusion I ended up with a really weird hot flash near the end of the infusion combined with an oddly scratchy throat, but earlier today--well, yesterday given that I'm writing this after midnight, I suppose--everything went off without a hitch.

Truthfully, I've been struggling to adjust to this new normal. I never really got a handle on the old normal, either. It's already a weird thought; the fact that the tiny tiny pieces of my body that I can neither control nor individually acknowledge are trying to kill me.¹ Maybe I'll figure it out, maybe I won't. For now, I'll just keep hoping I end up feeling better.