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.

 

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