Thoughts that cross my mind as a mom with IBD

Each and every day for the past 13.5 years I’ve wondered. Will today be the day? Will today be the start of another flare up. No matter how long I’ve been in “remission”, no matter how well I feel when my eyes open and I start the day. That worry. That concern. Always lingers.

It's not just about me anymore

The thought can be paralyzing at times as a mom of two under two. I have yet to be hospitalized since I became a mom, but the fear of it happening is amplified now that I have so much on the line. It’s not just about my well being, it’s about my family. It’s about being present, despite the pain I feel in the bathroom. It’s about the silent thoughts that go through my mind at the dinner table when I’m eating and feel pain. It’s the fear that I’ll always be fatigued and never have the energy I hope to have, no matter how hard I try to keep up. The guilt that builds up inside me when leaving the house to take my little ones on an adventure feels too overwhelming to bear.

The pain is debilitating

I just had a c-section 23 days ago. I went from feeling no Crohn's symptoms whatsoever for nine months, to constant bathroom breaks as I deal with the other unpleasant postpartum symptoms. I constantly wonder if I’ll be able to make it through a feeding without needing to go. As I breastfeed and pump, thoughts cross my mind about having a large enough supply in the fridge and freezer so that she's held over if mama ends up hospitalized. The abdominal pain and joint pain can get so bad that I limp weakly to the bathroom, debilitated by what’s going on internally. Walking around more like a 70-year-old than a 35-year-old. My husband and my mom watch with furrowed eyebrows and concern, asking me if I’m "ok". There’s only so much I can do to hide the way I feel. Deflecting and downplaying can only take you so far.

What was it that caused this pain?

Was it the coffee? Was it the stress of staying up all night with my newborn? Was it the cantaloupe I ate off my toddler's highchair? The detective work is a daily occurrence. Was it all the above? As deceptive as I try to be with those around me, I've come to notice how my son who turns two in March always seems to sense when something is off. Whenever I'm upset, he walks up and gently kisses my thigh. If I'm crouched on the ground, he walks up and gives me a big bear hug from behind. If I rush off to the bathroom, he gets upset if he can't sit on the floor and keep me company. He just seems to know.

I won't allow IBD to rule my life

No matter how many years go by and how well we think we can read our symptoms and our bodies, so much of this disease remains an ever-changing mystery. There's no sense in trying to outsmart the beast that is Crohn's disease, but I still refuse to allow it to rule my world and my life. It's when I verbalize these fears that I feel like I'm losing the fight. When I internalize these fears or keep them to myself, it's almost as if I feel my disease doesn't exist. But, unless I communicate this pain. Unless you talk about this pain, no one in our support systems can help. So please share and know you're not alone.