IBD: Fear of the Flare

I could write forever about the things I’ve learned during the last 10 years living with inflammatory bowel disease, but today I want to focus on one thing in particular: my baseline. While living with Crohn’s disease is often unpredictable in many ways, I have learned what my regular, daily life is like. I know what my symptoms look and feel like, where my ability to do things stands, what my body needs, and how it all affects my mood on a regular basis. These facts, they’re extremely helpful. They allow me to say yes and no to commitments and responsibilities, to work and family and friends.

A healthier gut in remission

In general, my baseline only varied slightly before I was in remission. My Remicade infusions would give me a great boost, I’d have a couple weeks at a decent peak, then a slow increase in symptoms leading up to a few crummy days before my next infusion. As my gut got healthier, these Remicade cycles evened out, and my body stopped reminding me my next infusion was around the corner. My weeks and months all started to look the same - in the best way possible. I had occasional abdominal pain, but nothing that stopped me in my tracks, and my bowel habits became fairly regular - a few times every day, soft but not liquid, only minimal urgency at times.

An increase in symptoms and fear of a flare

I’ve written a lot recently about my pregnancy, delivery, and breastfeeding. My daughter is now 5 months old, and I have been so darn lucky to experience and maintain remission for the last 18 months. However, there have been a few times recently that I had an increase in symptoms for a few days here and there, and my concern levels jumped off the charts. Preparing for, or navigating through a flare with a baby at home is a whole different world.

My health can change at any moment with Crohn's

But, what I realized applies to anyone, mom or not. Regardless of how recent your last flare was - a week, a month, a year, I know there’s a level of anxiety about when my health status might change at the drop of a dime. In my experience, there’s also not much anyone can do to prevent my anxiety - Crohn’s disease lives in my body and affects my heart and my brain. I know what my disease history has looked like, and I know that my symptoms can appear out of nowhere and escalate quickly. I’ve had a really difficult time not keeping one eye open at all times to the possibility of a flare.

Extra planning to stay healthy

This year, I’ve worked hard at many things, including how to be present in the moment and how to plan for my body and the circumstances I’ve come to know so well. For me, that means abiding by some self-agreed upon limitations - for instance, getting enough sleep, not consuming too much caffeine, and managing stress levels adequately.

Having a baby - it impacted ALL of those limitations.

It required extra planning. Extra check-ins with myself. And being on a little higher level of alert.

Was that trip to the bathroom too many for the day?

Was that stool too liquidy?

Is that pain more than my baseline?

And it’s meant adjusting. It’s meant doing what I have to do, instead of what I want to do. It’s pounding water instead of another cup of coffee to get through a busy afternoon. It’s going to bed as soon as the baby is asleep instead of taking time for myself. It’s being mindful that my body still requires my thought and my care, even when there’s none extra to give.

My condition can't be my top priority

This is the first time since I became symptomatic in 2009 that my disease hasn’t been able to be my top priority around the clock, and it’s been both challenging and liberating. I’d love to know if you’ve experienced anything similar in checking in with and adjusting your limitations!