Navigating the Fear of Increased Symptoms vs. Flare
Managing an active toddler, life in social isolation, and full-time work, is a lot. I literally worry every single time I am in the bathroom that this will be the day that unravels all the rest.
Like every IBD’er, I know my body’s routine fairly well.
Knowing when the pain will hit
Regardless of what I have for dinner, how early in the night I stop eating, how much water I drink, or any other variable, my bowels are most active in the morning. Sometimes, they wake me up from a fairly deep sleep, with a low-key nudge that it’s time to get moving.
Other times, the jolt awake is less subtle, and may involve a bit of clenching as I get up and walk to the restroom. Usually, this pattern repeats 2-3 times over a few hours, and then most often the rest of my day is fairly quiet.
As someone who has been working from home for a long time now, I try to schedule things as best as I can around my bowels.
Needing to use the bathroom immediately with Crohn's
However, not every day is successful in that manner - and truth be told I’ve taken occasional phone calls FTT (from the toilet) or been required to poop with my daughter in my arms (or on my lap). The thing I maybe wouldn’t have understood in my life before Crohn’s disease is sometimes when you have to go, you have to GO. NOW.
Lately, I’ve been noticing that my urge to poop isn’t confined to the morning.
The scary feeling that comes with urgency
And sometimes, it comes out of nowhere and is immediate, or even alarming. I’ve found myself becoming a required master at tensing and tightening my butt cheeks, moving increasingly slowly, all while my heart is racing and there are tears burning in my eyes. This quite literally scares the crap out of me.
To be honest, I’ve had more close calls than I’d like to admit recently. Sometimes it’s because it takes me an extra minute to find the iPad for my daughter before I go into the bathroom, or because I’m trying to gracefully get off a call without causing alarm, but other times it’s literally because I’m not already on the toilet - almost as if my body expects that I’ll just be hanging out in a place and position to evacuate without any warning.
Concerns around worsening symptoms
It has become increasingly concerning to me that at times there’s barely a minute to spare between the feeling that I have to go, and the going itself.
It’s concerning because this isn’t my normal. Because I’ve been in a state of remission for 2.5 years. Because my medication and my lifestyle had mostly paused this challenge for me, and now it’s back, seemingly with a vengeance.
And to be honest, it’s not just the urgency. It’s the frequency. Often, this is happening many times a day, many days in a row. And it’s the associated pain, and fatigue, that comes with too. It’s an increase in symptoms, most definitely.
But is it a flare? Is it the end of life as I’ve known it? Is it time for a new treatment plan, or an increase in medication, or surgery?
An increase in symptoms versus a flare
Navigating this fear at times is paralyzing to me.
As someone who has lived with IBD for more than a decade, I try to remind myself in moments of panic and worry that this is just one moment, or one day, or one week, and not forever. That I’ve been here before and it got better. That I have a good doctor, with good communication, and these are conversations to have on the regular.
For me, an increase in symptoms may mean for a few hours, or a few days. Sometimes, it lasts a week or two at the end of my infusion cycle. But when it becomes routine and unavoidable, it’s time to check in with my doctor. It’s time to ask questions. To express my concerns. And to be patient, with my body and with science and modern medicine.
Is there a fine line for you between an increase in symptoms and a full out flare? How do you navigate these? How do you stay calm? I’d love to hear your suggestions below.
What is your comfort level disclosing your IBD to your employer?