Family planning is filled with promise, excitement, and dreams that often feel within reach when you find the person you want to grow a family with. But when you have inflammatory bowel disease (IBD), the experience is far more complicated and nerve-wracking.
Diagnosed with Crohn’s disease in July 2005 at age 21, I waited 11 years before I started considering how pregnancy and motherhood would look for me because of my health complications, prior surgery, and medications.
I met my husband, Bobby, in the summer of 2013 through eHarmony. On our third date I told him I had Crohn’s disease. I wanted to tell him about my health issue early on to help gauge whether he was worth investing more time and energy into. Bobby was incredibly supportive of me having a chronic illness. If anything, the vulnerability and challenges of my disease brought us closer. We said from the start that we both wanted to have kids one day, and through each flare-up and hospitalization while we dated, we knew that someday that would be our end goal.
A month after getting engaged, I suffered my third bowel obstruction in 15 months. Surgery was the only option. I ended up having bowel resection surgery that involved the removal of 18 inches of my small intestine, appendix, and Meckel’s diverticulum on August 1, 2015, 10 months before my scheduled wedding day.
Until that point, I had never been told I was in remission by my gastroenterologist. After my life-changing surgery, I finally heard those magical words. Remission meant I would have more days when I felt well and was able to live without my symptoms dictating my life. Remission is important for women in their childbearing years because gastroenterologists always recommend this to be the case before trying to conceive to give the best chance for an uneventful and healthy pregnancy.
When I reached surgical remission, my soon-to-be husband and I knew we needed to capitalize on the timing. We knew I could be robbed of this sacred title at any moment and didn’t want to chance having to hold off on starting our family if I were to start flaring. So during a postsurgical appointment with my gastroenterologist in November 2015, we explained our game plan to my doctor. She put me on a prescription for a prenatal multivitamin and folic acid to help prep my body. We planned a colonoscopy the month before my wedding day so we could ensure we had the green light to try after we got married.
During this time, I wasn’t an IBD patient advocate. I wasn’t well versed on the resources available to women with IBD or who to turn to for support or guidance. I wasn’t sure what to expect but was extremely hopeful.
The only IBD mom I knew was my cousin’s wife. At that point, she had three kids (she now has four) and stayed on her biologic infusion throughout all her pregnancies and breastfeeding journeys. Witnessing her navigate motherhood firsthand inspired me to see all that was possible. My gastroenterologist was my main go-to for medical support in explaining the importance of seeking care from a maternal fetal medicine doctor (a high-risk OB-GYN who specializes in mothers with chronic illness), along with my OB-GYN. I knew to stay on my medication until the end of the third trimester and have my regular appointments every three months versus the typical six months.
What I’ve Learned Since Becoming Pregnant for the First Time
The weekend I launched my blog, Lights, Camera, Crohn’s, in July 2016, I also found out I was pregnant. I spent much of that first year writing about my journey to motherhood in real time, and I shared how I was navigating each milestone through pregnancy. I learned during that time about the rule of thirds when it comes to being pregnant when you have Crohn’s disease or ulcerative colitis: One-third of pregnant women with IBD women experience relief from symptoms, one-third deal with symptoms that stay the same, and one-third see an uptick in disease activity. I lucked out that with all three of my pregnancies, my Crohn’s was silent. It was a sweet reprieve for me each time. I could eat foods that usually triggered symptoms and drink coffee without needing to run to the bathroom between sips. I felt like a normal person, aside from the ever-growing bump!
I had monthly ultrasounds with my maternal fetal medicine physician for additional surveillance of each pregnancy. When it came to the method of delivery, I opted for a scheduled cesarean section, even though it’s not a necessity unless women have perianal disease. Personally, I was concerned about healing down there and the possibility of developing fistulizing disease.
I was nervous during my first pregnancy and felt like I was walking somewhat blindly, since I wasn’t aware of a patient community I could turn to for support and guidance. Instead, I relied heavily on my care team. But as I was blogging more and more and sharing my journey, it made me feel empowered to know I was becoming a trusted voice and resource for other moms-to-be and moms with chronic illness. I recognized the need for women with IBD to speak up about what it was like to bring a life into this world, and my advocacy work started focusing on motherhood more and more.
When I was pregnant with my second child in 2018, the IBD mom space really started to transform in wonderful and helpful ways. Suddenly, women weren’t on a desert island trying to make major life decisions on their own. Motherhood and IBD became commonplace on social media, blogs, podcasts, websites, and webinars, and became front and center in the patient advocacy space. I started seeing fellow IBD moms posting their stories on social media, and I felt seen and understood. By the time I was pregnant with my third child in 2020, I had an entire network of support from IBD moms around the world.
My blog articles inspired researchers to reach out directly to me to see if I was interested in enrolling in their projects about how biologics interacted with pregnancy and through early childhood as well as to ask about promoting their studies to the patient community. I was enrolled in research projects through MotherToBaby for my first two pregnancies and participated in the PIANO study with my third. I was glad that I could share my experience being pregnant while living with an IBD to help other women not feel so alone or afraid. Participating in research also gave me great peace of mind, knowing that my medication and Crohn’s did not impact the health of my children. To this day, I look at my three little ones in amazement that I was able to bring them into this world despite my health struggles.
Pregnancy and motherhood gave me a renewed sense of love and appreciation for my body. Despite living with Crohn’s, I’m so grateful I was able to carry my babies to 39-plus weeks, without any complications.
For women who are starting on their family-planning journey and worried about how an IBD will affect them during pregnancy and postpartum, I completely empathize with your concerns. I hope my experience and that of so many other IBD moms helps you. Seeing my children and how healthy they are, even though they were exposed in utero to my medication and during breastfeeding, is a reminder that my IBD wasn’t able to rob me of something I had dreamed about long before I was told I had Crohn’s disease.
Below is a list of organizations and clinical trials with a focus on pregnant women with IBD that have helped me in my journey. Hopefully they can help you, too.
Helpful Resources of Support for IBD Moms
IBDMoms is a safe space for moms affected by IBD (Crohn’s disease, ulcerative colitis, or indeterminate colitis). Patients and caregivers come together there to commune, chat, cry, ask and answer, laugh, and laugh some more. Founded by health advocates and moms Brooke Abbott and Amber J. Tresca, IBDMoms started with two friends sharing experiences and stories with each other and other moms affected by IBD, without reservations or misunderstandings.
The internet is teeming with advice for moms and moms-to-be, but when it comes to the unique challenges faced by moms living with chronic illnesses, the resources are few and far between. Mamas Facing Forward is dedicated to addressing this important unmet need. While not meant to replace the advice and guidance of doctors on these topics, Mamas Facing Forward endeavors to be a one-stop shop for moms and moms-to-be who are living with chronic illnesses and have questions or concerns about pregnancy and motherhood.
This site is the gold standard for all things IBD and motherhood. From family planning and conception to pregnancy and postpartum, this is a fantastic website for not only patients but also healthcare providers. The IBD Parenthood Project takes out the guesswork and makes motherhood and pregnancy a lot less scary and a lot more normalized. It’s a helpful tool for couples to feel empowered every step of the way.
MotherToBaby, a service of the nonprofit Organization of Teratology Information Specialists, is the nation’s leading authority and most trusted source of evidence-based information on the safety of medications and other exposures during pregnancy and while breastfeeding. It specializes in answering questions about the safety and risk of exposures to medications, vaccines, chemicals, herbal products, substances of abuse, maternal health conditions, and much more. I participated in MotherToBaby studies for my first two pregnancies by doing phone interviews with researchers before my babies were born and after they were here. My oldest turned 5 in March, and his study recently ended. As an IBD mom on a biologic, I wanted to contribute to research so that women would have more guidance than I did in the future.
PIANO (Pregnancy, Inflammatory Bowel Disease, and Neonatal Outcomes) is a national study of women with IBD and their children. This study looks at the safety of IBD medications in pregnancy and the short- and long-term outcomes of the children. I participated in this study with my 1-year-old son. I answered survey questions throughout my pregnancy, and then on delivery day, blood was taken from me, the umbilical cord, and my newborn to measure how much of my biologic was in my blood and in his the day he entered the world.
Accumulating evidence suggests that maternal health and diet during pregnancy and early life have an impact on the baby's microbiome composition and immune system development, with long-term health consequences, including establishing predisposition to Crohn's disease and other immune-mediated diseases. The Melody trial, conducted by the University of Massachusetts Medical School and the Icahn School of Medicine at Mount Sinai in New York City, tests whether a noninvasive diet intervention implemented during the third trimester of pregnancy can beneficially shift the microbiome in patients with Crohn's disease and ulcerative colitis and in their babies.