Tag: American Gastroenterological Association

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

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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.

IBD Parenthood Project: Proactively Planning Your Roadmap to Motherhood

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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

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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.

Register NOW: IBD Insider Patient Education Program (January 30)

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Calling all IBD patients and caretakers, the IBD Insider Patient Education Program is this Saturday (January 30) at 11 am CT. The virtual symposium will include IBD clinicians along with patient moderators. I’m excited to share I am one of three patients who will be speaking and sharing my experience during the live event.

The discussion will include updates from the Crohn’s and Colitis Congress, and we’ll talk about the following topics:

  • Getting the most out of your healthcare visit
  • Future therapies in IBD
  • Holistic Approach to IBD Care
  • Management of IBD Care during the COVID-19 pandemic

I’ll be teaming up with Dr. Brigid Boland, MD, Assistant Professor of Medicine, University of California, San Diego to talk about the future treatment of IBD. As someone who was diagnosed with Crohn’s nearly 16 years ago, it’s been extremely comforting to see how many therapies have become available since 2005 and all that is on the horizon. Below is a chart that was shared during the Crohn’s and Colitis Congress that shows all the therapies currently in research and clinical trials. When I started my biologic in 2008, I had two options. With each year that passes, we get closer to a cure and get more and more options to manage our disease if our current therapies fail us.

“I love the idea of designing a program with patient advocates where we are communicating to patients and their families about the latest breakthroughs in research and patient care. There’s never enough time in visits to talk about all the research going on that will impact their care now and in the future.  Ultimately, all the research and future therapies that are being studied are ways to improve patients quality of life and provide a lot of hope for everyone affected by IBD (patients, caregivers and providers),” said Dr. Boland.

As people living with a disease for which there is no cure, it’s in our best interest to stay up to date on all the latest happenings and developments. IBD can feel like a beast of a disease to be up against day after day. When you participate in learning opportunities like this that are right at the touch of your fingertips you empower yourself as you make decisions and grow through your patient journey. It’s like the education saying, “The More You Know.” As you make decisions about how you manage your Crohn’s and ulcerative colitis, as you take on flares from a hospital bed, as you navigate life milestones like career and family planning, having resources like this in your arsenal of knowledge will only help you advocate for yourself and collaborate with your care team.

It’s not too late to register! Click here to sign up and can’t wait to “see” you Saturday!