IBD Parents & Anxiety Around Diapers

Before becoming a mom, I asked my GI doctor and Maternal Fetal Medicine physician a million things about Crohn’s disease. What was the chance that my child/ren would inherit the disease? When would be the earliest that we should look for symptoms? Was there any preventative testing they could do to identify if my baby had IBD?

First off, it’s important to note that current research shows that when one parent has IBD, up to 3% of children will develop the disease. This means that nearly 97% of IBD parents' babies will not get IBD!¹ Second, I was advised that IBD will rarely develop or be displayed during infancy (birth to 12 months of age). In fact, a very early presentation of IBD occurs in less than 1% of pediatric IBD cases.²

While this information was all very helpful in my mental preparation for motherhood, something I hadn’t anticipated started occurring just days after I brought my daughter home from the hospital.

Vigilant diaper monitoring with a new baby

Or more specifically, what I mean is my overwhelming need to check the contents of her diaper every time there was more than just pee inside. Whether or not I was the original changer. Whether or not I was sleeping or in the shower. Whether or not it was a shart or a blowout.

What if there was mucus? Or blood? What if the color or consistency was concerning? What if someone else missed a tell that my daughter might have IBD and she suffered, even for just a moment in time? My mama-bear instincts combined with my history as a patient and an advocate had me in overdrive.

Worries that my daughter was developing IBD

Now as you can imagine, this obsession with my daughter's poop only increased my own anxiety. In the beginning, my daughter was mostly fed breastmilk, and she would only poop once every seven days. Like clockwork.

This was incredibly bizarre at first, but it just became part of our routine during those first few months together. Every poop was a dramatic blowout/blowup, sometimes even requiring that her clothes be tossed afterward, and she always seemed so happy afterward.

While our pediatrician and my husband both convinced me this was totally healthy, I maintained a level of background worry. My daughter couldn’t yet communicate beyond crying, and I consistently concerned that I’d miss a tell that her GI tract was in trouble.

The help of a therapist for anxiety around Crohn's

To be honest, it took some conversations with a therapist for this mama, along with some more research and some time easing into my role as a parent before these diaper checks subsided.

Today, my daughter is 16 months old and while I don’t look at every poop, both my husband and my nanny know to send me photos of anything out of the ordinary. My pediatrician also knows that sometimes he’s going to receive messages, questions, and/or photos when I need reassurance. Luckily, he’s pretty great and this hasn’t seemed to be a problem.

I know I can support my child with GI issues

As an IBD parent, I have spent so much time wondering what life might be like if any or all of my kiddos develop GI troubles. While I can desperately hope that’s not the case, I also know that I’m so educated today about IBD, I know that I’m prepared to educate them and advocate for them and make sure they never ever feel alone.

I know that I’m one of the best resources they’ll have, both for personal stories and advice, as well as tips and tricks, product recommendations, and community connections. I know that if I raise or support a child with IBD at any point in my parenting journey, it will be both emotional and a truly special connection between the two of us.

If you’re a parent, did you find yourself struggling with this same train of thoughts in the early days of diaper duty? How did you overcome these fears? How do you manage your worry for children inheriting IBD alongside your hopes for family planning? I’d love to hear your story below!