IBD Parenthood Project: How to Take on a Postpartum Flare—The Fear and the Reality

This post is sponsored by the American Gastroenterological Association (AGA). I am a paid program Brand Influencer; this post is sponsored and includes my own personal experiences.

While bringing a child into this world is one of the greatest miracles one can witness, it also brings about a world of worry for women with Inflammatory Bowel Disease (IBD). From the moment family planning begins, throughout pregnancy, and during postpartum, when you live with Crohn’s disease or ulcerative colitis it can feel like you’re just constantly waiting and wondering when the other shoe is going to drop. The looming fear of a flare during pregnancy and once baby is here is valid, and it’s real.

The unpredictability of IBD is amplified ten-fold when you have another life to care for and another life on the line. As a mom of three kids, ages four and under, who’s lived with Crohn’s disease for more than 16 years, flaring and being forced to leave my family to be hospitalized is something that’s always in the back of my mind. I know in my heart of hearts, it’s not a matter of if, but when. So how can we thrive through the unknown and not allow this fear to rob us of the joy of motherhood? The American Gastroenterological Association’s IBD Parenthood Project aims to serve as a resource every step of the way to help you feel less alone and more in control of your wellbeing.

Reading Between the Positive Pregnancy Lines

When you receive a positive pregnancy test, your world changes forever. It’s at this point that your IBD directly impacts another life. Prior to becoming a mom, I used to wait until the last possible moment to head to the emergency room. For one of many hospitalizations in my 20’s, I waited so long that my dad had to carry me as a grown woman through the hospital doors like a groom carries his bride. Fast forward to present day, and I’ve learned that it’s in my best interest to wave the proverbial white flag when I start experiencing symptoms that are sidelining me more than they should. The moment you relinquish control of your illness and see it less as an adversary and more as an ally, is the moment you won’t constantly feel pushed up against a wall. While it’s not easy to admit you are struggling, it’s empowering to know you’re being proactive and doing all you can to thrive.

When I write my gastroenterologist (GI) on the patient portal and express concerns about how I’m feeling, she calls me back and we come up with a game plan that makes the most sense. After I had my daughter, Sophia, I started feeling abdominal pain shortly after bringing her home. My GI knew I was breastfeeding and called me with safe options so that I could continue to do so. Because we nipped that minor flare in the bud, my remission was maintained, I didn’t land in the hospital, and I was able to be home and be present for my growing family.

I delivered my third baby, Connor, in July, and since then I’ve noticed an uptick in bathroom trips and abdominal pain. Since Connor is my last baby and I know I’ll never feel as well as I did when I was pregnant, it’s a bit more emotional for me. Luckily, with all three of my pregnancies, my Crohn’s was completely silent. I felt like a “normal” person. Knowing that it’s just me and my Crohn’s from this point forward hits differently. There have been countless days where I have been forced to keep a baby carrier in the bathroom, readily available, with space for my two older children to stand or play while I sit in anguish on the toilet wondering if this is it as I look with tear-filled eyes at my three healthy children before me. I won’t be surprised if I reach out to my GI in the days ahead for guidance, just to be cautious. I have a heightened awareness right now about the extra bathroom breaks and the gnawing pain that’s coming and going after I eat. Whether you are beginning the family planning process or postpartum, ongoing communication with your GI through all stages of having children is so important.

Addressing the Fears of IBD Women

The IBD Parenthood Project aims to address misperceptions about IBD and fears many women with IBD can experience through all phases of family planning (conception, pregnancy and after delivery).

Patients can find answers to common questions like:

  • Can I get pregnant with IBD?
  • Does IBD affect my fertility?
  • Will I pass IBD on to my baby?
  • Can I stay on medicine during pregnancy?
  • What if I flare during pregnancy?
  • Is it possible to have a vaginal delivery?
  • Can I breastfeed while on medicine?
  • Does my medicine change how I vaccinate my baby?

When it comes to the postpartum period, there’s a guide for postnatal care. The toolkit is a direct response to survey findings that reported women with IBD want more and better information about managing their disease. Being proactive and advocating for yourself throughout the pregnancy journey and as an IBD mom will not only make you feel empowered, but provide you with a sense of control, despite the unpredictability of your disease.

Thriving in the Face of the Unknown

Whether you were diagnosed with IBD prior to starting your family or after you delivered, Crohn’s and ulcerative colitis force us to wake up each day without knowing what the next hour will bring — all while raising children. Trust that your IBD will serve as a foundation for strength and that your kids will be your greatest motivators to push through and see the beauty that exists in your life despite your chronic illness. The IBD Parenthood Project is an exceptional tool that’s a reminder we are not alone in our worries, our dreams, and our struggles. I’m grateful our community has a resource that removes the gray area so many of us have encountered as IBD moms and helped be a light to lead us on our way to successful pregnancies, families, and motherhood journeys.

Flaring during pregnancy and after: Addy’s story and advice for IBD moms

Flare ups during pregnancy and after, starting a biologic while breastfeeding, and wondering whether one baby is enough—all experiences and concerns that have weighed heavily on 30-year-old Addy Irvine of Minneapolis. Addy was diagnosed with ulcerative colitis in May 2015. Addy and William 1 yearAddy’s son, William, is now 13 months old. This week—she shares a guest post about her journey to bring him into this world and the challenges and victories she’s experienced as a new mom with IBD. I’ll let her take it away.

Children were always a part of my plan. My husband and I knew we wanted to have children and were ready to start trying after I completed my Master’s degree. While my colitis had not been officially determined to be in remission, I was on Asacol and had not experienced symptoms for some time when my IUD was removed. After 8 months of “letting the universe decide” when to have a baby, we found out I was pregnant! Yay!

My first trimester was filled with the usual discomforts. Second trimester, you know, the one where you’re supposed to enjoy pregnancy and start feeling better? Not for me. I went through the worst flare of my life. It was easily the most miserable I’ve ever been, both physically and mentally. I had to stay home from work multiple days a week and was unable to help at home. I don’t know how I could have made it through without my husband’s support. 15 weeks

My doctors put me on oral Uceris, and when that wasn’t enough, they also put me on the rectal foam. The Uceris made things bearable, but I knew I wasn’t doing well.

I wasn’t gaining any weight despite my ever-growing belly. My friends and colleagues started noticing that I was losing weight. At first, it was in the chipper way people comment on weight loss. After a while people started to ask about it in a concerned voice.

I’d tell myself, “At least my baby is doing okay!”

By 3rd trimester, I could function normally most of the time. At my 36-week growth ultrasound, it was determined that my son had intrauterine growth restriction, and they talked to me about the possibility of induction between 37 and 39 weeks of gestation. 33 weeksAfter my second-high blood pressure reading that week, a nurse advised me to come into labor and delivery. When I arrived, I was diagnosed with gestational hypertension and started the induction process the next morning at 37 weeks.

Five days of induction later (really), my beautiful baby boy, William, arrived at 5 pounds 1.5 ounces. He was small, but healthy! After he was born, my UC got so much better until he was 2 months old when I had another flare. Suddenly I needed to care for my newborn in addition to taking care of myself. It seemed an insurmountable task. With frequent bathroom trips and intense fatigue, the newborn phase was made even tougher.

Holding on to the hope of breastfeeding

Breastfeeding was something I was really hoping for as part of my journey into motherhood. Newborn WilliamWhen William was born, I was thrilled, and so fortunate, to have a successful early breastfeeding relationship with him. When I started flaring again, breastfeeding became a significant challenge. I’d be with William during a late-night feeding, get a few minutes in, then have to wake my husband to keep William safe while I quickly ran to the bathroom. Obviously, this made William more than a little upset to start eating only to be pulled away. I also became increasingly worried that he wasn’t getting the nutrition he needed from me because I wasn’t absorbing nutrients the way I needed to. I upped my supplements and kept close tabs on his weight but continued breastfeeding. At this point, I knew I needed to do something different with my medications. What I was doing clearly wasn’t working.

I started to research biologics and met with my doctor to discuss my options. He recommended Entyvio, and my insurance approved it. I worried William would be harmed by breastfeeding while I was on a biologic. Would he be more susceptible to illness because of it? Would my supply be affected? My doctors reassured me that it was safe to be on Entyvio and continue breastfeeding, but I knew the research is limited. After seeking information and support from other moms who have breastfed on biologics, I decided to take the risk, start the biologic, and continue breastfeeding.

“Healthy mom, healthy baby” is the way I decided to frame it.

From flaring to remission

After 3 infusions, I started to feel significantly better, and I am now in clinical remission for the first time since being diagnosed. I finished my breastfeeding journey about a month ago. My supply wasn’t affected by starting the biologic, and my son has had absolutely no ill effects. He gets sick less than I do! Most importantly, I can engage with and care for him so much better than I could while I was ill. Family photo

This journey has made me think twice about having more children. Pregnancy and childbirth were really, hard on my body because of my UC and other complications I experienced after delivery and I’m not sure I want to risk my health again. Sometimes I wish that I were like “normal” people who approach pregnancy without having to think about all of this. I remind myself that this is MY normal, and that’s okay. And it’s okay to have one child if we decide to do that. I keep repeating this: healthy mom, healthy child(ren).

Reflecting on my journey, here are some lessons learned that I hope you take away:

  • Work closely with your GI doc and your Maternal Fetal Medicine team to make a plan BEFORE trying to have a baby (or even “letting the universe decide!)
  • Prioritize your own health, even when pregnant. Remember: healthy mom, healthy baby. This includes taking care of your mental health.
  • Connect to other moms who have CD or UC to learn from them
  • Flaring during pregnancy and postpartum is physically and mentally exhausting – lean on your support system heavily if you find yourself in that place
  • If breastfeeding is important to you, talk to your doctor about whether it’s safe to continue to do so while on a biologic – utilize the IBD Parenthood Project as a helpful resource.