My Crohn's Diaries

Until late September, I was feeling great. Better than I had been in years. The Inflectra/Remicade infusions were doing what they were supposed to do, and after some gentle advocating for myself, even dealing with the infusion center wasn’t so stressful anymore. I was working out, sometimes twice a day. I was able to get up at the same time every day, no heavy listless fatigue at the center of everything pulling me down, down down. I was, by all accounts, in remission.

Then September happened. At the end of September, I began to feel so very tired again. Tired in a way that’s hard to explain to people who haven’t felt it. Tired in a way that sleep couldn’t fix. I felt like I couldn’t work out like I had been. Like I couldn’t do anything. Fatigue was a thing I didn’t understand until I felt it.

I can’t be the only person with a chronic illness who sways wildly between two states: when I’m feeling good, I am convinced I was somehow misdiagnosed. When I’m feeling bad, though, I’m convinced something is horribly, horribly wrong. This summer, I felt the former. I felt like someone had made a mistake. The numbers had lied. I was the exception.

But then, in September, it began with fatigue. It began with snoozed alarms, with coming into work later and later, with exhaustion like a weight in the center of my being. But I had a stressful week at work. I had worked twenty-four-hours straight and then two overnight shifts quite unexpectedly. My diet was off. My coffee consumption was through the roof. My sleep schedule was nonexistent. I chalked it up to all of that, to a nudging by unexpected emergent conditions at work toward the edge of, well, a needing to get some shut eye.

But then other symptoms arrived on fatigue’s heels. Since I want to share everything about this disease without flinching away from the more embarrassing parts of it, I’ll share those too. I was constipated, but felt like I had to go to the bathroom often and urgently. Often, nothing would come out. When it did, it was teeny, tiny and unsatisfactory. And then the pain came, one spot in my lower abdomen that pinched while I pooped. It hurt enough that I found myself saying “ow” out loud. And then there was the blood. Which is really, to my shame, the only symptom that ever makes me sit up and go, wait a minute, something’s wrong!

I messaged my doctor’s office, and we ran tests, finding my calprotectin higher than it had ever been, even pre-diagnosis. Despite that, though, my Remicade levels were where they were supposed to be. The medicine was not failing me. But I was, somehow, failing it.

I went on a round of Prednisone, which, as awful as it is, cured my pain immediately. Within a day, it felt like. And the bleeding was gone soon after, too.

My doctor said to keep an eye on my symptoms after my next infusion and sent me on my way. We were both hoping it was a fluke. She said to let her know if I had any symptoms at all in the meantime. That if they came back, I’d need a colonoscopy and maybe a med switch yet again. It seemed my track record for having to switch meds every six months or so was persisting.

But I had hope that it was just because of work. It was just because I had done it to myself. It’s easier, sometimes, for me to think that what’s happening to my body is because of something I did. It makes it easier to place the blame.

I had my last infusion about a month ago, and all things pointed to being back on track. Until. Of course, there’s an until, or I wouldn’t be writing this at all.

Until the fatigue came back. I noticed it immediately, but still, the child in me tantrumed against it. No, no, no. I don’t want to be a sick person. I don’t want to be ill. Where was my conviction that I was falsely diagnosed?

This flare up, the pain has been severe. In my lower abdomen, all morning and all night, a burning, cramping feeling caused me to hunch over. To hold my breath. It would come and go, minutes or seconds at a time, but so deeply painful it felt like something was terribly wrong. I veered to the other side of the spectrum, convinced something structural had gone wrong inside me and was now screaming out protests. It didn’t matter what I ate, what I did, or if I took Tylenol or not.

I muttered “ow” to myself, held my breath, tried to stretch or curl or hunch, tried heat and ice and movement. Nothing helped.

It’s strange how different my flare ups have been. How differently they present. How they seem to be escelating in severity, in urgency, in making me stop and take notice.

I messaged my doctor’s office like she had told me to do, and her assistant, perhaps not understanding my message, said they would prescribe me an antacid. Which, I know and still know, would not fix what was happening. I knew, as many do with IBD, the difference between heartburn and, well, whatever this was.

A few days passed, and the blood came back, something more concrete to point to to say something bad was happening, and I sent another message. They prescribed me another round of Prednisone and scheduled me for the colonoscopy at the end of January. Which is where we’re at now. Still in pretty constant pain, a few days into the new round of steroids, daunted by the time before me. By how slow they seem to be working this time. By the way pain makes me feel helpless and desperate and sick.

I will be on these steroids for six weeks, but then what? I have my infusion at the end of December, but if I can’t get in to get my colonoscopy until the end of January, what then? Do I suffer through another flare up while I’m waiting? And then, after that? I wait for the biopsies to come back and for the doctor to prescribe a different medication that will take a month or two months for insurance to approve, and it’ll be February or March or April until I have a chance to feel better, won’t it? It will be well into the new year.

And I am daunted and horrified by that fact, and yet there’s nothing I can do about it. So, that’s just what’s going to happen, and it’ll be fine like everything is fine, and I’ll get through it like I get through everything, and that’s that, isn’t it? That’s chronic illness. That’s life.

I hope you all are feeling good and in remission this holiday season. And if you’re not, I hope you know you have at least one friend out here, doing it with ya.