Inflammatory Bowel Disease (IBD) affects millions of Americans, with many being women of childbearing age who face unique challenges during pregnancy and beyond.
Yet the intersection of maternal health and IBD remains largely unaddressed in
healthcare conversations, particularly for Black women, who are disproportionately at risk for both maternal complications and IBD-related healthcare disparities.
A Personal Journey Through IBD’s Barriers
In 2017, after visiting six different doctors, I was finally diagnosed with Crohn’s Disease.
The journey to diagnosis was just the beginning. Managing my condition required
frequent specialist visits, expensive medications, and infusion treatments that initially cost $1,000 out of pocket every seven weeks while I was underinsured and relying on disability after losing my corporate job.
It wasn’t until a nurse informed me about patient assistance programs that I realized I could have avoided those crushing costs. That moment illuminated how many patients, specifically those in underserved communities lack access to critical information about resources that could change their lives.
Now imagine facing this same system while pregnant, when every decision affects not just your health, but your baby’s future. Think about the mothers who are told “there’s
nothing else we can do” when coordinated, informed care could make all the difference.
The Reality for Women with IBD
Women with IBD face unique challenges during pregnancy and postpartum:
Pre-conception concerns: Medication management, disease activity optimization, and nutritional status assessment requires specialized planning.
Pregnancy complications: Higher risks of preterm birth, low birth weight, and pregnancy-related complications demand coordinated care between
gastroenterologists and maternal-fetal medicine specialists. For Black women, these risks are compounded, they are three times more likely to die from pregnancy-related causes than white women.
Postpartum challenges: Breastfeeding considerations with IBD medications, managing flares while caring for newborns, and accessing appropriate support systems.
The Healthcare Gap
Despite these complexities, many healthcare systems still lack integrated care models. Women are often forced to navigate fragmented systems, and bounce between specialists without a coordinated plan.
Black patients face even greater barriers and are over three times more likely than white patients to seek IBD care through emergency rooms rather than specialists. They are also 15% more likely to develop colorectal cancer and 35% more likely to die from it.
Social determinants of health like; income, access, transportation and neighborhood conditions, further prevent many in racial and ethnic minority groups from receiving equitable maternal and chronic disease care.
This gap in healthcare leads to:
- Delayed diagnoses
- Poor disease management
- Higher mortality rates
- Increased reliance on emergency care
- Delayed or inadequate prenatal care
- Medication non-compliance due to pregnancy fears
- Increased maternal and fetal complications
- Postpartum mental health challenges
Building Solutions Through Community
My experience with IBD revealed how healthcare inequities disproportionately affect underserved communities, leaving patients without essential tools, education, and
resources. Managing this condition meant frequent specialist visits, costly medications, and infusion treatments that initially cost $1,000 out of pocket every seven weeks.
But the financial burden was only part of the story. I’ve also experienced the profound grief of losing two daughters, a pain no mother should endure. These combined experiences opened my eyes to the critical gaps in care for women with IBD, especially during life’s most vulnerable moments like pregnancy and postpartum recovery.
The intersection of chronic illness and maternal health creates unique challenges that our healthcare system isn’t equipped to handle. Now imagine other women facing this same fragmented system while pregnant, when every decision impacts not just their health, but their child’s future.
Addressing maternal health in IBD requires more than individual healthcare encounters, it demands community-driven solutions. When women share experiences, advocate for better care, and support each other through these challenges, real change happens.
Healthcare providers, patients, and advocates must collaborate to:
- Develop evidence-based care protocols
- Improve provider education on IBD and pregnancy
- Create support networks for affected families
- Advocate for policy changes ensuring coverage for specialized care
Join the Movement
The conversation about maternal health and IBD is just beginning. Your voice, experience, and advocacy can help shape better outcomes for thousands of women.
Ready to make a difference?
Join us for Pull Up a Chair: Maternal Health Community Roundtable on Saturday, August 30, 2025, 11:00 AM – 12:30 PM at Hammock Hall Boyd Hill in St. Petersburg, FL.
Register now: thestephanieawynnfoundation.org
Together, we can ensure no woman faces the intersection of IBD and motherhood alone.
Sources:
- Geoffrey Nguyen et , “Racial disparities in utilization of specialist care and medications in inflammatory bowel disease,” American Journal of Gastroenterology, 2010
- NIH National Library of Medicine, PMC10201824
- MedPage Today, “Patients Describe Problems Accessing IBD Care, System Delays and Communication Are Common Frustrations,” Feb 2019
- Aimed Alliance, “Addressing Health Equity in Inflammatory Bowel Disease,” 2022
- CDC Women’s Health: Maternal Mortality. https://www.cdc.gov/womens-health/features/maternal-mortality.html
What challenges have you or loved ones faced with maternal health and chronic conditions? Share your thoughts below.
