IBD Parenthood Project: How a new initiative brings hope and clarity to IBD moms

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 consider yourself to be healthy or if you battle a chronic illness, the thought of pregnancy and motherhood can be overwhelming. So many unknowns. So many what ifs. _f6b0473As a mom of two, who has battled Crohn’s disease for more than 13 years, I can relate to the concerns and the anxiety about what the future holds, what our bodies are capable of and how our disease will respond as we bring new life into this world.

My son turns two in March and my daughter was just born January 14. To say it’s been a busy couple of years is an understatement! That being said, family planning, pregnancy and postpartum care are all experiences that I’ve dealt with recently as a woman with inflammatory bowel disease (IBD). When you live with Crohn’s or ulcerative colitis, there’s no telling what the next hour or the next day will bring. You’re oftentimes on medications and navigating disease symptoms and flares. You wonder if your body can take on the role of creating a new life, when it has continually failed you and caused flare-ups of disease activity. You worry about the likelihood of passing on your disease to your children. There’s a laundry list of questions and thoughts that run through your mind. ibd-parenthoodproject-logo-01

My experience is much like any woman who battles a chronic illness. So much gray area, not enough concrete research or answers. This is what inspired the launch of the IBD Parenthood Project. The new website aims to provide IBD patients with medical facts about IBD and pregnancy. You can think of it as a one-stop-shop for all your questions and a reliable resource to address your uncertainties and validate your decisions. The IBD Parenthood Project aims to address misconceptions that so many of us universally have when it comes to medications, working with a healthcare team, delivery, breastfeeding and postpartum care.

18-untitled-9170.jpgThis resource gives mothers like me and you peace of mind and empowers us to make decisions about our bodies and for our families, in the safest way possible. The information arms us with the knowledge to not only allow us to be our own best advocates, but also comfort us as we build our families and take on the role of mom.

During my first pregnancy, I was very hesitant to breastfeed my son because of the biologic I was on. I worried about the lack of long-term studies available and if a postpartum flare would impact my ability to nourish him. I wasn’t sure where to turn to for sound, credible advice. I turned to Google and stumbled upon conflicting information and varying opinions shared on online support group forums. Making this decision was difficult, img_1346and the information out there led me to feel a bit uneasy. I chose to formula feed my son because of the lack of research and consistent information that I was able to find.

Now, less than two years later, my thoughts on breastfeeding while on a biologic have evolved. I’ve been able to educate myself thanks to resources like the IBD Parenthood Project that have given me medically-based facts on the benefits of breastfeeding my little girl. With Crohn’s, you often feel like you’re riding in the car, but not in the driver’s seat. This new website and toolkit makes you feel like you’re the one behind the wheel. It provides a newfound confidence that so many of us lack.

The  “Pregnancy & IBD: After You Deliver” fact sheet addresses all the big questions that arise once your baby is here. The information covers everything you need to know for yourself and for your child. As we know, the postpartum period, or the “fourth trimester,” is complicated, regardless of your health. Throw in IBD and it makes for what can be an even more complicated transition. Having this resource at our disposal saves us from doing the homework and helps guide us as we take on the unknown and acclimate to our new life.

Motherhood has inspired me greatly in my battle against IBD. It’s shown me that despite my body repeatedly challenging me, I was still able to bring life into this world. Family planning and having children is a personal decision. But, if it’s something you dream of and something you hope for in your life, please take the time to educate and equip yourself with the knowledge that is now readily available, right at your fingertips. Remember, with proper planning and care, women with IBD can and do have healthy pregnancies and healthy babies.


How motherhood has helped me discover I’m so much more than my IBD

We walked out of the automatic rotating doors of the hospital and the cold air hit my face. I looked up to the sky in thanks, to show my gratitude and to take in the moment. We had our baby girl in tow, our Sophia Shea. img_5915It was a brisk January morning. Tears filled my eyes as I was overcome with emotion. Our rainbow baby is here, safe and sound. Another pregnancy behind me, a pregnancy that silenced my Crohn’s disease and provided sweet reprieve from my chronic illness. It was time to take Sophia home and start our life as a family of four.

When your health is taken from you and when you receive a diagnosis of inflammatory bowel disease, life prior to illness often feels like a distant memory. There’s something so sacred and so special about bringing a healthy life into this world, despite your own shortcomings.

My Sophia, much like my sweet son Reid, are my inspiration and motivation to push through the difficult days and find strength and perspective within myself. The creation of their lives has renewed my faith in my own body. img_5886Each time I have a procedure or deal with painful symptoms, I see their faces, I say their names in my head, and it brings me a sense of calm. My goal when Reid was born, was to stay out of the hospital until he could walk, luckily that’s been the case. He’ll be two in March. Now, I have that same goal following the arrival of my daughter.

Pregnancy and child birth bring about such an amazing, miraculous transformation. You see life created right before your eyes. You experience a shift in your own identity. There’s nothing like it. There are no words to capture the emotions and the overwhelming love you feel for your children.

Finding the balance: Motherhood and IBD

17-untitled-9166Motherhood and IBD can be a difficult and challenging balance. Some days the fatigue and symptoms are so debilitating you feel like you’re falling short. At the same time, the days where you’re feeling well, remind you that you are so much more than your disease. Just because you have a chronic illness, doesn’t mean you are robbed of experiencing the beauty of life and what it feels like to have your very own family.

Women often reach out to me with questions regarding fertility, conceiving, pregnancy and what it’s like to take on parenting while battling IBD. There are so many unknowns. I know it can be daunting. img_5751It all starts with recognizing where you are in your patient journey and then determining when your symptoms and body are in the best shape to get pregnant. While everyone’s disease experience is different—the worries, concerns and fears associated with parenting and chronic illness are often the same. Always know you are never alone. Communicating these feelings with those around you, makes all the difference. Lean on our patient community and all those who’ve lived your reality.

I treated my pregnancies the same. I had colonoscopies prior to trying, to ensure I did not have active disease. Once I received that green light, I discussed my game plan with my OB, high risk OB and my GI and had monthly and sometimes weekly appointments. Each time—I stayed on my medication and vitamins from start to finish, which includes the biologic drug, Humira. I had scheduled c-sections for both. It’s all about finding what works for you, what brings you comfort as you embark on this journey and being confident in your decisions. It’s your body. It’s your baby.

29-untitled-9292When Sophia Shea entered the world January 14, 2019, our family received a wonderful gift. Between our son Reid and our baby girl, we could not be more blessed. My chronic illness has given me such an appreciation for health and for life in general. With the pregnancies behind me, I often reflect on where I started back at age 21 in 2005. At that time, in my eyes, I was Natalie and I had Crohn’s disease. There was no telling what my future would hold. Now, nearly 14 years later, at age 35, I’m so much more. I’m a mom to two under two. I’m a wife. I’m a daughter. I’m a sister. I’m an aunt. I’m a friend. And I also have Crohn’s.


SOCKIT2IBD: How you can help this family knock out IBD

Since the day Brian Strasser met his wife, Mona, she’s been battling Crohn’s disease. They met in college more than 30 years ago. During that time, Mona underwent an appendectomy, through that procedure, natalie - family picit was discovered she had Crohn’s disease and a portion of her intestine was removed. IBD has been a big part of their lives, their relationship and their family—but, it hasn’t stopped them from enjoying life, finding humor amidst the difficult days and having children.

Speaking of family, their son Aidan (now 21), was diagnosed with Crohn’s at age 13. Much like his mom, he tends to put on a brave face during flares and takes his symptoms and his disease one day at a time.

“Having empathy is a must. My wife and Aidan are true warriors and that is what really inspires and motivates me to want to help spread awareness,” said Brian.

Brian and his family go above and beyond to help get the word out about IBD. In prior years, they launched “Crunches for Crohn’s and Colitis”—crunches for crohn's pose - suburbana campaign both in real life and on social media to connect to those with IBD, create awareness and raise money for the cause. Crohn’s and Colitis Canada backed this effort and supported the effort on a national level. Here’s how it worked—Brian shared a challenge that he would do 10,000 crunches until $10,000 was donated to Crohn’s and Colitis Canada. For five months straight, Brian posted a video of himself doing crunches, while wearing costumes.

“There were several days where I was not 100 percent inspired to post or had time to post, but I made a commitment and even if the video went up at 11:59 pm that day, I did it. In the end, we raised almost $15,000 for the cause and was put directly towards research. I know it’s only a drop in the bucket compared to what is raised annually, but it was my part to make a difference to some degree,” said Brian.

Now—Brian and his family have launched a new video campaign called “SOCKIT2IBD”. The goal is similar—to raise awareness about IBD through videos on social media. You can think of it like the ALS Ice Bucket challenge, but with a twist.

You may be wondering how you can SOCKIT2IBD? It’s simple:

  • Grab a pair of socks
  • Put them on your hands
  • Get in a boxing stance and on video say “Jab, Jab, Hook, Uppercut…Sock It to IBD!”
  • Share a short explanation of why you’re passionate about the cause and implore friends and family to donate to the cause.
  • Donations can be made by clicking this link.
  • Include the hashtag: #SOCKIT2IBD in your social media post and tell others to do the same.
  • When you post to social media, tag Brian Strasser on Facebook, @strassarama on Instagram and @10kCrunches for Twitter.natalie - sockit pose - brian

As Brian says, even though we live in different countries, we’re both fighting the same end goal—a cure for Crohn’s and ulcerative colitis.

Click here to check out the SOCKIT2IBD YouTube channel.



Bigger Than Basketball: Taking IBD support to new heights

Loyola University of Chicago Men’s basketball team had a fairytale season last year. There were countless headlines about the Ramblers being THE Cinderella team during March Madness. natalie hayden 5At the time, Nick DiNardi was a senior walk on and served as a scout to prepare players for each game. Aside from his skills on the hardwood, Nick has battled Crohn’s colitis since he was 11.

The diagnosis came at a time when he was enjoying sports and just being a kid. While playing football, he lost around 25 pounds rather abruptly. Along with weight loss, Nick started feeling extremely fatigued, had intense stomach pains, bloody stool and vomiting. About a year after these symptoms persisted and following several tests and scans, Nick received his IBD diagnosis.

“When I was told I had Crohn’s disease, I was not really sure what to think. I had never heard of it and as an 11-year-old, I really turned to my parents to tell me how to handle it. I tried to continue living my active lifestyle, although many times it was very hard. I felt lonely especially because I felt like I was the only person in the world who had this disease. nick and mom, nick sickMy grade school friends had no idea why I was crying in class, oftentimes teasing me while I was in pain,” said Nick. “My parents and siblings were always there to do everything they could to make me feel better, but I just never felt like anyone related to the pain I was in.”

In the 11 years since Nick received his IBD diagnosis, it took him nine years to encounter another person with the disease. He felt isolated and alone in his journey. These feelings inspired him to create a 501 (c)(3) nonprofit called Bigger Than Basketball (BTB) in August 2018.

“The mission of BTB is to raise awareness and funding for research to benefit individuals suffering from Crohn’s Disease and ulcerative colitis. BTB encourages, educates, and mentors individuals affected by these diseases to achieve their goals while managing their illness,” said Nick.natalie hayden 2

One of Nick’s main missions is to make those who are diagnosed with IBD have a solid support system. He hopes BTB will serve as a resource of comfort, a safe space for those in the IBD community to share their stories in order to help others directly or indirectly affected by these diseases. His goal is to create a network of support that allows those of us with IBD to take off our mask and be real about your struggles.

“IBD is a beast of a disease. You can have great days where you feel active and energetic, but you can also have days where you don’t feel like talking or even getting out of bed. With the creation of our network, we want to allow people to express what type of day they are having, so others may be able to relate with their current situation,” explained Nick.

“Bigger Than Basketball is truly an exciting new organization, as one of its key goals is to raise awareness in young persons diagnosed with Crohn’s Disease or ulcerative colitis and show they are not alone,  there are others just like them who understand and are experiencing what they are feeling, and that they can still achieve their dreams with the proper understanding and education about their condition,” said Dr. Russell Cohen, MD, FACG, AGAF.

As a member of the Board of Directors and Director of the Inflammatory Bowel Disease Center at the University of Chicago Medicine, Dr. Cohen believes BTB is truly a unique way to reach young people who need help, while expanding awareness and funding with the aim to conquer these conditions in our lifetime.

It’s Nick’s hope that BTB’s network will serve as a buddy system and provide a safety net for people to fall back on. Along with joining the BTB network, you can volunteer and attend upcoming events or donate to the cause. Nick is also looking for people to join the associate board, preferably those living with IBD. To learn more, email: info@biggerthanbasketball.org. natalie hayden 4

Nick’s IBD has also inspired him to work in the field of medicine, specifically research. He currently works at the University of Chicago with a focus on IBD and Celiac research.

Be sure to show some love to Bigger Than Basketball on social media:

Twitter: BTB_Foundation

Instagram: btb_foundation

Facebook: Bigger Than BasketballFoundation