What I Wish Every Current and Future IBD Mom Knew

This month marks nine years since I became a mom.

Nine years since my life split into a clear before and after.
Before motherhood.
Before learning how much my heart could stretch.
Before realizing I could love someone so fiercely while still carrying a body that has never felt predictable or safe since my Crohn’s diagnosis in 2005.

I entered motherhood already shaped by chronic illness. Crohn’s disease had been part of my identity for years before I ever held a positive pregnancy test in my hands. I knew what it meant to live with uncertainty. I knew how to navigate flares, fatigue, medications, and fear. What I didn’t know was how those experiences would transform me into an entirely new version of myself—an IBD mom. When I got pregnant, I only knew of one woman, my cousin’s wife, who has Crohn’s, and stayed on her biologic throughout her four pregnancies.

This week on Lights, Camera, Crohn’s a reflection on my patient journey and what it felt like to go through family planning, pregnancy, and motherhood as a woman with IBD and what I want others to know.

When I Was “Just” the Patient

For a long time, my world revolved around survival. Appointments. Side effects. Lab work. Scopes. Injections. Recovery days. Canceled plans. Hospitalizations. Weaning off steroids. Learning how to read my body’s subtle warning signs. Learning when to push and when to rest.

Crohn’s taught me resilience long before I knew I would need it in motherhood. But it also taught me hyper-awareness. A constant scanning of my body for what might go wrong next. A relationship with fear that felt both protective and exhausting. As time passed, I learned to listen to how my body was speaking to me through symptoms.

When I imagined becoming a mom, that fear came with me. I had bowel resection surgery two months after getting engaged, I was planning a wedding, and for the first time after a decade of living with Crohn’s I had FINALLY heard the word “remission” for the first time. My fiancé (now husband) and I knew once we got married 10 months later, that we would need to capitalize on that remission and hopefully start our family while we knew I was well enough to do so. Despite being in remission, I still had many questions and thoughts racing through my mind:

Would I be healthy enough?
Would my medication be safe?
Would I flare during pregnancy or postpartum?
Would my disease rob me of moments I dreamed about?
Would I be hospitalized and away from my child?

…the list went on. If you’re an IBD mom or one day aspire to become one, you know the questions we all face.

I wanted to become a mom more than anything, but I carried quiet doubts about whether my body was capable of sustaining not just a pregnancy, but a lifetime of caregiving.

Becoming a Mom with Crohn’s

The day I became a mom everything shifted. Not because my Crohn’s disappeared. Not because my health suddenly became perfect. But because my why expanded.

Suddenly, my body was no longer just something I endured. It was the home my child lived in.
The vehicle through which I would show up, nurture, protect, and love. That realization changed the way I approached my overall health as a mom with IBD. My pregnancy with Reid gave me a renewed sense of love and appreciation for my body.

Taking my medication wasn’t just about me anymore.
Advocating at appointments wasn’t just self-preservation.
Resting wasn’t weakness.
Prioritizing sleep wasn’t indulgent.

It was parenting. I began to see caring for myself as an extension of caring for my child. That mental shift — from “patient” to “patient who is also a mother” — was subtle but seismic. Rather than waiting until I was too weak to even walk through the emergency doors by myself, I started to alert my care team within days of recognizing that my Crohn’s seemed a bit “off” so that we could nip any issue that arose in the bud.

Learning to Mother Through Difficult Days

Motherhood with Crohn’s is not picture-perfect. But regardless of your health status, there is no such thing as perfect when it comes to being a mom. You must remind yourself of this and give yourself grace.

There are days I have shown up with heating pads tucked under sweatshirts.
Days I’ve read stories from the bathroom floor.
Days I’ve powered through school drop-offs on pure adrenaline and grit.  Days I’ve shown up to PTO meetings and coached soccer on pain medication.
Days I’ve cried because I felt like I was failing at both having a chronic illness and being a mom.

I’ve been in “remission” since 2015, the entire time I’ve been a mom, which I’m eternally grateful for, but just because I’ve been in remission does not mean I don’t face countless struggles with this disease. That’s something I wish people would understand. IBD is a chronic illness, just because someone is in remission doesn’t mean they are free of pain, stress, and more.

I’ve had to learn that good motherhood doesn’t require constant physical perfection. Some seasons look like big adventures and energy. Others look like quiet cuddles, movie days, and choosing rest over outings.

Both count.

My children are being raised by someone who understands empathy, flexibility, and listening to their body. That matters. You’ll notice as a parent with chronic illness how quickly your little ones develop empathy. It’s next level. And so beautiful. You don’t even have to teach it, it’s innate in them because of their daily reality.

Raising a Child Who Understands Illness and Compassion

One of the unexpected gifts of being an IBD mom is watching compassion take root early.

My three children know that bodies work differently.
That medicine helps people live.
That rest is sometimes necessary.
That we don’t judge what we can’t see. They’ve learned that strength isn’t always loud.

Sometimes strength looks like getting up anyway.
Sometimes it looks like asking for help.
Sometimes it looks like choosing yourself.

Those lessons feel just as important as anything in a textbook.

How Motherhood Changed My Relationship with My Body

Before becoming a mom, there were times my body felt like the enemy.

The source of pain.
The reason plans fell apart.
The thing holding me back.

Motherhood complicated that narrative.

This body carried three children.
This body nourished three children.
This body continues to show up, even when it’s tired, inflamed, or aching.

It isn’t perfect.
But it is more than capable.

I still have hard days. But honestly, I have a lot more amazing days. I never take a feel-good day for granted.
Even after more than two decades of living with Crohn’s, there are still moments where I fantasize about what it would be like to just be a healthy person and not have the burden of my disease.

But I also hold more gratitude now. A grounded, honest one. My three children are my greatest motivation to push through and be my healthiest self.

From Surviving to Advocating

Becoming a mom didn’t quiet my voice.

It amplified it. Ironically, this blog, Lights, Camera, Crohn’s, launched July 23rd, 2016… I found out TWO days later I was pregnant with my oldest son, Reid. So, this blog truly captures every moment of pregnancy, family planning, and motherhood from the perspective of someone who learned as I went.

I advocate not only for myself now, but for a future where my children grow up in a world that understands chronic illness better than the one I grew up in.

I speak out because I want fewer people to feel dismissed.
I share stories because I want fewer people to feel alone.
I push for better care because I want better options for the current and the next generation.

I want couples to feel empowered by their decision to have a family, however that may look for them.

I hope women feel comforted by all the constant research going on to address what’s safe and effective as they bring life into this world. I participated in IBD pregnancy studies with all three of my kids, my youngest who turns five in July will be followed through the PIANO study until age 18!

Motherhood turned my survival into purpose.

Nine Years In: Who I Am Now

I am still a patient.
I am still navigating Crohn’s.
I still face uncertainty at times, but through a much different lens.

I am also a mom of nearly a decade.

A mom who has learned how to hold fear and hope at the same time.
A mom who knows that love is not measured in energy levels.
A mom who shows up imperfectly, consistently, and wholeheartedly.

I didn’t become a mother despite Crohn’s.

I became a mother with Crohn’s.

And over the past nine years, I’ve learned that those two identities can coexist, not in conflict, but in strength. I swear I blinked and somehow my sweet Reid, my baby, is nearly double digits. I don’t think there will ever be a time in my lifetime that I don’t stare at all of my children in awe of their existence, I’m sure if you’re a parent you feel the same way. It’s a miracle they are here, healthy, and thriving. So much of why I share my family so openly is to show how my children, who were all exposed in utero to Humira, are doing so beautifully in school, sports, and socially.

To the IBD Moms (and Future Moms) Reading This

You are not broken.
You are not behind.
You are not failing.

You are doing one of the hardest jobs in the world while managing one of the hardest diseases. That deserves recognition.

Later this month, my Reid is nine.

Nine years of learning.
Nine years of adapting.
Nine years of loving fiercely in a body that isn’t always kind.

And I wouldn’t trade this evolution for anything.

IBD Pregnancy Studies

Global Consensus on IBD and Pregnancy

PIANO (Pregnancy in IBD and Neonatal Outcomes) Study

WIsDoM Study: A Study Focused on Female Fertility and Pregnancy

MotherToBaby

When Science Meets Story: The Patient Voice in the Global Consensus on IBD and Pregnancy

It is an exciting and transformative time for the IBD community when it comes to family planning and pregnancy. For years, patients and providers faced uncertainty and conflicting guidance about everything from fertility to medication safety. Now, with the publication of the Global Consensus on IBD and Pregnancy, we finally have a unified, evidence-based roadmap created by leading experts worldwide.

This groundbreaking research, jointly published across multiple top journals, is more than just a collection of data—it’s a lifeline for patients, caregivers, and clinicians seeking clarity and confidence. And for the first time, that guidance comes to life through a series of 12 videos now available online. As the sole U.S. Patient Ambassador and Group Lead for patient advocates worldwide, I was honored to contribute not only to this historic project, but also to share my own journey in the video series—bringing the patient perspective directly into the global conversation.

Grateful for Dr. Uma Mahadevan and the entire team for their incredible work on the Global Consensus.

Check out the video series

Following the release of the research from the 2025 Global Consensus Conference on IBD, a series of 12 videos were also published on the PIANO (Pregnancy in IBD and Neonatal Outcomes website), featuring experts speaking on best practices, emerging data, and consensus statements.

Among those 12, my Patient Perspective video is unique. It’s the only video in the lineup where you hear firsthand experience from an IBD mom. During my unscripted 18-minute video, I share openly about the tough decisions I faced personally, the hopes and worries I encountered while bringing babies into this world, and what I want fellow patients and doctors to know. As an IBD mom of three kids (now ages 8, 6, and 4) who were all exposed in utero to Humira, I have a unique perspective to share.

I know what it’s like when you’re 32 weeks pregnant and have to do a biologic injection while you see your baby’s foot kicking at your belly. I know how stressful it is when you don’t know if you’re going to flare while pregnant or shortly thereafter. I know how complicated and overwhelming it can feel when you’re juggling a chronic illness along with pregnancy and motherhood.

Having a patient video placed alongside expert commentaries is a statement: our lived experience is essential to understanding how guidelines work in the real world. I hope my words leave you feeling seen and empowered.

The 12 published videos cover the following topics:

  • Adverse Outcomes of Pregnancy in IBD
  • Fertility and IBD
  • Fetal and Neonatal Adverse Events in IBD
  • IBD Medications During Pregnancy
  • IBD Medications During Breastfeeding
  • Immunizations for Infants of Mothers with IBD
  • IBD Medication During Breastfeeding
  • Key Findings and Recommendations
  • Management of IBD During Pregnancy
  • Maternal Factors in IBD
  • Preconception Counseling and Contraception for Patients with IBD
  • The Patient Perspective

Why These Videos Matter

Each video is a piece of a bigger puzzle. Together they tell a story about where we are now, where we need to go, and how patients can be—and must be—central to that journey.

Bridging gaps between patient, clinician, and researcher. These videos are designed not just for patients, but for caregivers, physicians, policy makers, and anyone interested in improving IBD care. Seeing things through the patient lens can spark better communication, more empathic care, and guidelines that address what matters most.

Empowerment through shared experience. Whether it’s coping with symptoms, navigating treatment decisions, or facing uncertainty, this research will make you feel more confident in every decision you make along the way. Rather than feeling like there’s an overwhelming amount of gray area, you can see the roadmap of decision-making created from the Consensus that will help you each step of the way.

How to Watch & What To Do Next

  1. Watch the videos: Listen firsthand and educate yourself. An educated patient is an empowered patient. It’s one thing to read a published medical study, it’s especially helpful to see these videos and watch the research come to life.
  2. Join the conversation: Use these videos as conversation starters, take what you learned into clinic visits, have conversations with your partner/family/friends, or on social media. When you’re talking about family planning, make sure your GI and Maternal Fetal Medicine doctors are aware of the Global Consensus on IBD and Pregnancy to ensure they are up-to-date on the very latest research.
  3. Join the PIANO study. This is a great way to become a citizen scientist and use your journey to motherhood as a way to pave the way for others. I participated in PIANO with my youngest child, and he will continue to be “followed” until age 18. It does my heart good to know we’re helping bridge the gaps in understanding so women with IBD now and in the future can feel more comfortable about staying on medication in pregnancy and during breastfeeding.

Too often, patient voices are an afterthought or an add-on. Being featured as an integral voice, not a sidebar, is a powerful shift. The fact the Global Consensus Conference team made such a point to incorporate patients like myself who are IBD moms, from around the world, goes to show just how inclusive and comprehensive this research is.

Final Thoughts

Living with IBD means navigating uncertainty, physical challenges, and emotional strength, but it also means being part of a community that continues to push boundaries in care. These videos highlight not only the science and data, but the lived realities that bring those numbers to life. Patient voices don’t just complement medical expertise, they help shape the future of care. By placing my perspective alongside global experts, the Consensus reminds us that guidelines are most powerful when they reflect both evidence and experience.

As an IBD mom, I think about what this progress means for my three children and for the next generation of families impacted by this disease. I volunteer my time and energy for these projects because they are at the heart of my patient advocacy and genuinely matter so much to me. The inclusion of patient voices today paves the way for a future where no one feels alone in their decisions about pregnancy and IBD. Together—patients, clinicians, and researchers are building a roadmap that will make the journey clearer, safer, and more hopeful for those who come after us.