Living In The Gray Area Between UC Remission And A Flareup

I’ve been putting off this piece for awhile now. The topic has changed as my body has — going from “remission guilt,” to “flare fear,” to what is now a piece about the in-between. In my 25 years with ulcerative colitis (UC), I’ve been in my longest period of remission the past couple years … up until around the time I first started writing this piece.  

This is how it started. I hit a hard patch in my personal life last month and uncharacteristically missed a few days of medicine. I used to be shocked at how people could let that happen. In terms of pet peeves, hearing an “Oh, I forgot my meds” comment was at the top of my list. For the majority of my life, I’d never let my medication slip my mind. However this February, that clearly changed. I was feeling good, and my last lab results backed up that feeling. So when my grandma had an emergency hospitalization, which I jumped in to help with, the last thing I thought of was maintaining my treatment regimen. 

I started seeing some minor symptoms crop up. I figured it would quickly resolve itself once I got back on track with my meds, so I didn’t jump to call my doctor. Not only because I was busy, but also it was mainly a mix of (false) beliefs that temporarily overcame me. 

Superstition: If I give attention to these symptoms, it will give them power to manifest into a full-blown flare.

Reality: No. Ignoring my symptoms is what made them progress. Oh, the irony.

Denial: I’m not having frequency, cramps or diarrhea, so this fatigue and blood is not a big deal. People get tired when they’re busy. Blood can be normal for people with hemorrhoids. It doesn’t mean I’m flaring.

Reality: Fatigue and blood historically precede my flares with more symptoms. I had actually been fatigued for a few months, but I made excuses for it being “normal” tired. My whole concept of what is a normal is skewed, given that UC has knocked my energy levels down a few pegs for most my life.

Blind optimism: I’ve been doing so well for two years now, this won’t become a thing. 

Reality: Over the course of two years, since first achieving remission, I had gradually weaned off half of my meds and lowered the dosage of one. For pandemic-related reasons, I stopped going in for lab work as often. Thus with every small tweak of my medical regimen, I wasn’t seeing the small rise in inflammatory markers.

When I googled these terms together, I found a 2014 NPR piece with a line that was almost verbatim what I was was trying to convey: 

There’s a long tradition of denial, superstition, wishful thinking, risk-taking (calculated or not) and willful ignorance when it comes to illness and health — true over time, anywhere in the world and for people of varying backgrounds. 

I wasn’t the only one after all! I brought up these complex feelings to my fellow spoonie friend; she really understood what I meant and shared that she even had a similar experience recently.

I finally took off my rose-colored glasses and snapped back to reality. I talked to my GI and was seen locally (my doctor is in NYC, but I’m currently living in Florida), and I got my labs up-to-date ASAP. Though I wasn’t happy to see the inflammation in my lab results, my doctor has since adjusted my medicine accordingly, and within weeks my symptoms have all but vanished. Of course, there’s a nagging fatigue that I haven’t quite pinpointed: is this normal adult life, my illness or a bit of both? That’s what the next appointment will be for! And in the meantime, I have to be content with being neither here nor there, but rather in the gray area between remission and a flare.