IBD Parenthood Project: Proactively Planning Your Roadmap to Motherhood

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.

Whether you’ve been daydreaming about being a mom since you were a little girl or found your lifelong partner and are exploring the possibility of a future that includes pregnancy and motherhood, creating a family when you have IBD takes a bit more planning than for the average person. My journey to motherhood unfolded differently than I had anticipated. For as long as I can remember, long before my Crohn’s disease diagnosis at age 21, I aspired to one day have children.

After I received my IBD diagnosis in 2005, and then when I was put on a biologic in 2008, my mind often raced when it came to reaching the milestone of motherhood. But being that I was only in my early 20s and single, I didn’t feel much pressure and figured I would cross that bridge when it was time for me to walk it.

Fast forward to June 2015, I had just gotten engaged to the love of my life, Bobby. Less than a month later I was hospitalized with my third bowel obstruction in 16 months. Surgery was the only option. On August 1, 2015, while planning my wedding, I had 18 inches of my small intestine removed, along with my appendix, Meckel’s diverticulum, and ileocecal valve. Up to that point, surgery had been my greatest fear, but my care team comforted me by saying the bowel resection would provide me with a “fresh start.” A fresh start that would help when it came time for family planning. A fresh start that put me into remission for the first time in my decade-long battle with the disease, paving the way for married, family life.

Leaning on the IBD Parenthood Project for Guidance

When you’re a woman with IBD who hopes to be a mom one day, it’s not unusual to feel lost and confused about how to navigate family planning, pregnancy, and beyond. Even though the thought of having a family can feel daunting—believe me I get it—with proper planning and care, women with IBD can have healthy pregnancies and healthy babies. But sadly, many women with IBD decide not to have children based on misperceptions about their disease and pregnancy. The number of women with IBD who are voluntarily childless is three times greater than that of the general population. It’s heartbreaking to think of all the women with IBD who could be moms but are not because they aren’t aware resources like the IBD Parenthood Project exist.

Openly communicating your future plans with your care team long before you want to start trying for a baby helps set the stage for what lies ahead and enables your gastroenterologist (GI) to tailor your treatment plan accordingly. When I had my post-operative appointment with my GI in November 2015, eight months before my wedding, my husband and I let her know we wanted to capitalize on my surgical remission and get pregnant as soon as we could after our wedding day. With that intel, my GI put me on a prescription prenatal vitamin, folic acid, and vitamin D, along with my biologic. Now as a mom of three healthy children, who had three healthy pregnancies while living with Crohn’s, I credit my GI for her proactive efforts that set me up for success and deep remission over the past six-plus years. Prior to trying to conceive, I also scheduled a colonoscopy to further confirm that my Crohn’s was under control. My GI would walk in after each procedure with a big grin on her face and would give us a thumbs up and say we had the green light to try for a baby. Having her stamp of approval made me feel much more at ease.

Time is of the Essence

I know I was extremely fortunate with the timing of my surgery and remission and the fact that I did not have any issues getting pregnant. It can be much more challenging and heartbreaking for others. If you’re flaring or symptomatic, the likelihood of those issues presenting in pregnancy is significant. When it comes to the “rule of thirds”— one third of women with symptoms improve, one third get worse, and one third experience the same symptoms as prior to pregnancy — you want to be mindful of how you’re feeling. I understand remission doesn’t happen for everyone. I get that it’s hard to be patient when all you want is to have a baby and your biological clock is ticking. But don’t rush into a pregnancy unless your health is in check.

As a trusted voice in the GI community, the American Gastroenterological Association is dedicated to improving the care of women of childbearing years living with IBD and is committed to redefining industry standards to further optimize health outcomes for mother, baby, and provider. That’s why it created the IBD Parenthood Project as a resource for women and HCPs through the pregnancy journey. 

While various providers can be consulted during pregnancy (OB, dietitian, lactation specialist, psychologist, NP, PA, midwife, and pediatrician once the baby is born), an OB and/or maternal fetal medicine specialist should lead pregnancy-related care and a GI with expertise in IBD should lead IBD care. Communication among these providers, as well as any other providers involved, is very important. During the family planning process and pregnancy, think of yourself as the point person, leading the charge and making sure each member of your care team is in the know.

Be Overly Transparent

If pregnancy and motherhood is something you are hoping to embark on as part of your life journey, be proactive and articulate your needs and wants, even if they are years down the road. The IBD Parenthood Project toolkit does most of the homework for you and lays the groundwork for your roadmap. It’s empowering to be prepared and to be well-versed on how to best manage pregnancy while taking on IBD.

Now that my family of five is complete, when I reflect on how we came to be, I’m grateful for the resources and support I had every step of the way and that my Crohn’s disease didn’t rob me of the future I had always hoped for.

The IBD Parenthood Project: The Love-Hate Relationship of Breastfeeding

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.

Breastfeeding is a labor of love. Like many women, it doesn’t come easy for me. As an IBD mom who already fears passing my disease down to my kids, there’s added pressure and stress. In the United States, an estimated 1.6 million people have Crohn’s disease or ulcerative colitis. Of those, roughly half are women, and most will carry the diagnosis during childbearing years, throughout all phases of family planning: trying to conceive, pregnancy and postpartum. As an IBD mom of three going through postpartum right now, one of my biggest stresses and focuses revolves around breastfeeding.

-What if I take this pain medicine for my Crohn’s? Will I need to supplement? 

-What if I have a postpartum flare, will my milk supply go away?

-What will happen if I’m hospitalized?

-Will I flare once I stop breastfeeding and my hormones regulate?

-If I stop too soon, will my child end up having an increased risk of IBD?

…the list goes on…

The journey to motherhood for women with IBD requires several complex decisions and coordination among specialty care teams from the stage of family planning until postpartum and beyond. The IBD Parenthood Project aims to address common misperceptions and fears women with IBD and their providers experience throughout all phases of family planning (conception, pregnancy and after delivery). By eliminating the gray area and serving as the gold-standard for navigating pregnancy and motherhood with IBD, our patient community can rely on this support that helps uncomplicate the journey.

This beneficial and much-needed initiative was created by gastroenterologists (GIs), maternal-fetal medicine (MFM) subspecialists, and patients and is led by the American Gastroenterological Association (AGA) with support from the Society for Maternal-Fetal Medicine, the Crohn’s & Colitis Foundation, and patient support network, Girls With Guts. The IBD Parenthood Project launched in January 2019, just as I delivered my second child. To this day, I feel so grateful to have this information and confidence in my choice to become a mom even though I’ve lived with Crohn’s disease for more than 16 years. It’s empowering to know despite the unpredictability of IBD, this initiative allowed me to feel like I’m in the driver’s seat when it came to creating my family and knowing the choices I’ve made were and are supported by science and medical facts.

To the random lady in the church elevator who asked me if I was breastfeeding my son Reid when he was a month old, and I was a first-time mom.

To the lactation consultant after I delivered my daughter Sophia, who told me since I have Crohn’s, it’s imperative her gut only be lined with breastmilk.

To the nurse coaching me nonchalantly about breastfeeding my son Connor and underestimating the challenges it can present…who I later found out “only” breastfed one of her children for 2 weeks…

To anyone who is struggling with the physical, emotional, and mental stress of something that sounds “easy” and “natural” — simply feeding your baby — I get how complex and taxing it is. I’m in the thick of it now with my son who was born July 14. So far, he’s only had breastmilk…both from nursing and by a bottle. But it’s not pretty for me. The engorgement, the round the clock pumping, the soaked t-shirts, the night sweats, the discomfort to even wear a bra or sleep on my side. It weighs on me. There’s the outside pressure and the pressure I put on myself to keep going, even though I don’t enjoy it. It’s super rewarding to see Connor thriving and making gains all because of me. But there’s also a lot of stress to be a child’s only source of food, especially as an IBD mom.

Different feeding approaches with all my babies

With my firstborn in 2017, I wasn’t well-versed on the benefits of breastfeeding and feared not only further exposure to my biologic, but also flaring, so I only breastfed my son for 3 days in the hospital so he could get colostrum. By 2019, I was well-versed on the positive impact and the safety profile associated with breastfeeding while on a biologic, so I breastfed my daughter until she was 6 months old. I had hopes of making it a full year, but unfortunately my milk supply disappeared once my menstrual cycle started back up. This time around, I felt the anxiety about having to breastfeed creep up when I was only a few months pregnant. Between research showing that breastfed babies have a lower risk of IBD, coupled with antibodies from the COVID-19 vaccine, I feel the need to do all I can to protect my son from the what if, even if it feels mentally, physically, and emotionally taxing each day.

The Fourth Trimester has several challenges for women that often go undiscussed. However you choose to feed your child is your business and should be based on what is best for you and your family. This is a judgement free zone. I’ve fed my three babies differently. But the pressure mounts when you yourself have an illness with no cure and feel as though breastfeeding can help improve your odds of not passing it on to your offspring. In my mind, down the road, I don’t want to ever think I coulda, shoulda, woulda done anything differently when it comes to protecting my offspring from IBD.

The IBD Parenthood Project tackles some of the common questions related to breastfeeding as an IBD mom. There’s a downloadable toolkit that features patient-friendly information and easy-to-digest lists of key questions to ask your doctor as you’re thinking of becoming pregnant and beyond.

What I Want Fellow IBD Moms to Know

Navigating motherhood while taking on IBD is overwhelming. With proper planning, care and coordination among treating healthcare providers, women with IBD can have healthy pregnancies and healthy babies—and breastfeed if they choose to do so. For me, breastfeeding provides a sense of normalcy and gives me a renewed sense of love for what my body is capable of, despite having Crohn’s disease. Give yourself credit for going through pregnancy with IBD, delivering a baby, and continuing to nourish your little one with your body when they are in the real world. The blood, sweat, and tears are inevitable.

Just this week I experienced awful abdominal pain. The kind of pain where you can barely breathe, your hands start to tingle, and you go back and forth about whether a trip to the emergency room is imminent. As I rocked myself on the toilet and heard my newborn crying in the bassinet my mind raced. My 4-year-old stood before me. I could see the fear in his eyes. My immediate thought was—what can I take to get this pain under control—will it affect my ability to breastfeed? In that moment, the pressure to think outside of myself and manage my disease felt suffocating.

There comes a point when the mental health and wellbeing of the mother must come first so she is able to be the best version of herself for her kids. If breastfeeding is taking away from the joy you could be experiencing or the connection you are longing for with your child, don’t feel guilty. Whether your child is exclusively breastfed, or formula fed, or receives a little of both, they will thrive. I’m personally all about flexible feeding. A little nursing, some pumping, and some formula has worked best for me. When the time comes, and I need a break or feel too consumed by being the sole provider of nourishment for Connor, I’ll feel confident in supplementing with formula. There’s no shame in my game and there shouldn’t be in yours, either. Take advantage of invaluable resources like the IBD Parenthood Project and be confident in each of your personal health decisions when it comes to whether or not you want a family and how you choose to feed your baby.

Juggling two under two while taking on Crohn’s disease

As the weeks go by and the days get closer for baby girl to arrive, I can’t help but feel anxious and nervous about what it’s going to be like having two kids under two, while managing my Crohn’s disease. Throughout this pregnancy, I’ve quickly come to realize how my needs and health oftentimes take a backseat as I take care of my little guy. IMG_3626While I feel incredibly blessed to be in this position, it comes with its own unique set of worries.

Prior to becoming a mom, my sole focus could be taking care of myself. While hospitalizations and flare ups were always dreadful, looking back, I had no idea how much “easier” it was to go through sickness, when all I had to worry about was me. I think many IBD women are hesitant to become moms because they are fearful of being able to juggle it all. That’s a valid concern, but personally motherhood has always been something I’ve dreamed of and wanted. I wasn’t about to allow my disease to hold me back from experiencing it.

That being said—you have to find patience within yourself and a trust in listening to your body’s symptoms to know when you’re doing too much and need to slow down. You need to be willing to wave the white flag at times and surrender to your illness. You have to be willing to ask for help. You need to be confident in the fact that your children will grow up differently than others. IMG_3802They will live within a home that talks about chronic illness and experiences it each day. Your little ones will learn compassion and perspective before they are even able to truly communicate. If you have a child and chronic illness, you know what I mean.

So far, I’ve been a mom for 19 months. I’m still a rookie. I’m still in the trenches of learning how to navigate this new life. But, I’m proud of how I’ve taken on the role of motherhood and balanced my illness along with it. I finally feel like I’m in sort of a cruise control with my son. In January, everything will start anew as we welcome our daughter into the world. Reid simply can’t wait for “sissy” …he constantly kisses my belly and tries to pull up my shirt, so he can “see” her.  While I can’t wait either, the fear of a postpartum flare once again weighs on my heart. There are so many what ifs as a chronic illness mom.

What if I’m hospitalized and have to leave TWO babies at home until I’m well? What if my disease spirals out of control and I’m home alone with nowhere to turn? What if the stress of taking care of two children with limited help sends me into a flare up? What if I’m not enough? I’m trying to be proactive now to prepare myself mentally for both the magical moments and the challenges that I’ll be presented with when we become a family of four. IMG_3723Whether it’s with motherhood or with living life with Crohn’s, it’s important to remind yourself that everything goes through stages. There are highs and lows, but each moment is fleeting.

One of the most amazing parts of pregnancy when you have chronic illness is witnessing your body create a miracle, right before your eyes, after years of letting you down. It’s a beautiful reminder that despite your illness and the parts of you internally that tend to malfunction, you are still able to carry a child and bring a life into this world. Pregnancy and motherhood have given me a renewed sense of self in my patient journey with Crohn’s. Motherhood has helped me love my body again, after years of damning it. It’s shown me that while IBD has shaken me to the core and blindsided me countless times, it hasn’t taken away one of the life’s most gracious gifts and experiences.

 

Taking on dehydration with the help of DripDrop

Making sure I don’t get dehydrated while taking on Crohn’s disease can feel like an uphill battle at times. Add in pregnancy to the mix and dehydration can be a real concern. Not just for me, but for my baby. I never thought I’d be so happy to reach the second trimester to arrive. For six weeks straight, I vomited 2-5 times a day, along with several bathroom trips (thanks to my Crohn’s). There were moments I was nervous. There were times I wondered if my baby was getting the nutrition and hydration it needed to thrive and develop. This is where DripDrop came in.

DripDrop is an oral rehydration solution (ORS) developed by a pediatrician. dripdropEvery stick of DripDrop is formulated for fast absorption, making dehydration recovery as effective as an IV—without having to take in the excess sugar found in sports drinks. It contains a precise ratio of sodium, sugars, and other electrolytes that absorb quickly and hydrate more effectively. For me, this was huge. There were times I called my OB after throwing up multiple times, wondering if IV fluids were necessary…but thanks to DripDrop, I was able to stay in the comfort of my home and boost my hydration in a matter of minutes.

As a pregnant mom of a 15-month-old, this was huge for me. No one likes getting IV’s and no one enjoys sitting in the hospital and being away from family. DripDrop is the solution, literally and figuratively to combat this. This pregnancy, just like my last, I consult with a regular OB, a high-risk OB and a gastroenterologist. All my doctors gave me their stamp of approval for using DripDrop. Before I started using it, I consulted with each of my healthcare providers. They looked at the ingredients and were impressed. My high-risk OB even said she was going to start telling other patients about it, so they too could try it out!

DripDrop has given me peace of mind, comfort and Flavor-graphic-squarehelped me get through the dehydration that comes along with pregnancy symptoms. It’s super easy—you just need water and then pick your favorite flavor to mix in. My favorite flavor is Berry. Along with helping me feel better through my pregnancy, I find it helps when I take my son out for walks on 90 degree hot and humid summer days in St. Louis and when I physically feel the need to boost my reserves.

You don’t need to be pregnant, you don’t need to combat a chronic illness. DripDrop is an amazing tool for all of us. Our military, athletes, firefighters…you name it, have experienced the benefit. Interested in trying it out? You can get a two-stick trial for $3.99 by clicking heredripdrop2

I’m excited to continue to use DripDrop throughout my pregnancy and to share my journey with you. As a chronic illness mom, who’s preparing for baby number two, I’m grateful to have DripDrop in my arsenal so I can be as strong and present as possible.