Motherhood and IBD: The parallels and what I’ve learned

Let me tell you how small a bathroom feels when you’re on the toilet, your crawling baby is at your feet going after the garbage can and your toddler is pulling at the toilet paper. This has been the scene of my life, multiple times a day, over the past year. Sophia turns one tomorrow (Jan 14!). mom3I feel like we blinked and her first year passed by. That being said, having a baby and a two-year-old, while being a stay-at-home mom and freelancer, who happens to have Crohn’s disease, has its challenges.

Each day, while often exhausting, has been an incredible blessing. I remember being pregnant and wondering how motherhood in general, along with IBD would be. I remember when Reid was born in 2017 and learning to adjust to parenthood and having a family. I remember being pregnant with Sophia, wondering how I would have any capacity energy-wise to take on being home with two little ones, but I did it. Somehow you find a way to get by, to exist, to adjust to your new normal.

Much like navigating chronic illness, with motherhood, you have moments where you feel you’ve found your groove, and then suddenly something happens to prove otherwise. But, that’s the beauty of it. The hard times are temporary and then the beautiful, fill- your-heart with overwhelming joy and happy tears in your eyes moments happen when you least expect it. mom2

Parenthood isn’t all sunshine and rainbows. Some moments really suck. Some moments are incredibly frustrating and overwhelming. Some moments you wonder how you’re going to get through. I think there’s this expectation and this fake persona (thanks to social media) that makes us all think we need to do more, be more, and love every moment of parenting, when we all know that’s not the case. Raising little people isn’t for the faint of the heart, but it’s one of the greatest gifts we can be given.

Through motherhood I’ve learned the importance of health—physically, mentally, emotionally, and spiritually.

Through motherhood I’ve learned how imperative it is to rely on your support system. There’s no sense in trying to do this alone.

momof2blog2Through motherhood I’ve learned to soak everything in, because you blink, and another year or milestone goes by.

Through motherhood I’ve learned the importance of listening to my body, resting when necessary, and saying “no” to plans that don’t fill my cup.

The thing is—when you live with a chronic disease like Crohn’s, you learn all these “lessons” long before you become a parent. But, the actual meaning shifts, when you have more to think about than just yourself.

One year ago, today, I went to bed a mom of one and the very next day I woke up, had a c-section and my heart doubled in size and we became a family of four. The addition of Sophia to our family has been an incredible blessing. I don’t know how I ever lived without her. It’s amazing how families adjust to their new dynamic and change in such beautiful ways as they continue to grow.

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Photo credit: Alexandria Mooney Photography

Whether you want to be a mom someday, are currently trying to have a baby, are pregnant, or a mom of one or several kids, let’s all practice a little more grace and less judgement. The only shoes we’ve all walked in are our own. No matter how people choose to present themselves, everyone has bad days, everybody has their own set of struggles and worries, and chances are, we can all relate.

Pregnant? Interested in Furthering IBD Research? Check out the Melody Trial

One of my biggest fears as a mom with Crohn’s disease is that one day my children will inherit the disease. It’s a worry that crosses my mind more than I would like to admit. Whether my son tells me his tummy randomly hurts or if my daughter seems to have several number two diapers one day, my mind instantly goes to that thought. I know I’m not alone in feeling this way. When it comes to research about pregnancy and IBD, the information is starting to come to fruition, but is lacking. There is still so much gray area. Sinai Team

UMass Medical School and the Icahn School of Medicine at Mt. Sinai are on a mission to improve the health potential of babies born to IBD moms. Their research team is launching a clinical trial for 200 women in the United States right now that involves diet intervention in the third trimester of pregnancy. The trial is called the MELODY Trial (Modulating Early Life Microbiome through Dietary Intervention in Crohn’s disease).

Barbara Olendzki, RD, MPH, LDN is an Associate Professor of Medicine and the Nutrition Program Director of the Center for Applied Nutrition at the University of Massachusetts Medical School. Olendzki, Barbara headshotShe is involved in research and clinical care, and she created the IBD Anti-Inflammatory Diet which is being investigated through the MELODY Trial. Barbara explains how through the MELODY Trial, the team is aiming to intervene in the transmission of a pro-inflammatory microbiome from women with Crohn’s to their babies.

“Accumulating evidence suggests that maternal health and diet during pregnancy and early life have an impact on the baby’s microbiome composition and immune system development, with long-term health consequences, including establishing predisposition to Crohn’s disease and other immune-mediated diseases. By modulating the maternal microbiome during pregnancy through diet, our team of researchers hope to promote healthier immune system development in infants born to mothers with Crohn’s disease.”

Why the microbiome plays a key role

The microbiome refers to the communities of microorganisms, including viruses, fungi, and bacteria, living on and in the human body. Recently, altered microbiome in early life has been linked to the risk of developing asthma, eczema, allergy, autism, type 1 diabetes and other myriad of immune-mediated diseases.  Barbara says the team’s preliminary data demonstrates that babies born to mothers with IBD have a higher abundance of pro-inflammatory bacteria and depletion of beneficial bacteria for up to at least 3 months of age, compared to controls.

“Babies born to mothers with Crohn’s Disease are at a substantially increased risk of developing the disease. Specifically, compared with individuals with no family history, the risk of Crohn’s in first degree relatives of a patient with Crohn’s disease is ~8-fold higher.”

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Babies born to mothers with IBD have less diversity of beneficial microbiome than healthy controls, and higher levels of calprotectin, an inflammatory marker common in Crohn’s disease.

How the MELODY Trial will work

The MELODY Trial will test whether a non­invasive diet intervention implemented during the third trimester of pregnancy can beneficially shift the microbiome in patients with Crohn’ s disease and in their babies. This study’s goal is to determine if manipulation of the mother’s microbiome, through diet, would benefit their baby. The diet aims to promote a healthier immune system during a critical time of immune system development. theMelodyTrial_Color

The study targets the third trimester specifically, as this is when certain changes occur with mom and baby to get the baby ready for birth. The baby is thought to share more of the mom’s microbiome at this time, making the final 12 weeks of pregnancy the most opportune time to beneficially influence the baby’s early formation of their microbiome.

Diet is a wonderful way to change the microbiome! Specifically, the IBD-AID (IBD-anti-inflammatory diet) incorporates the avoidance of certain carbohydrates and emphasizes the importance of modifying fatty acids. The IBD-AID also supports inclusion of fruit and vegetables (to achieve optimal nutrient intake, targeting phytosterols, antioxidants, and other plant-based anti-inflammatory components). The diet is presented in three phases, according to each patient’s tolerance, digestive and absorptive capacity,” said Barbara.

In addition, the IBD-AID includes foods with pre- and probiotic properties. Prebiotics are foods (typically nondigestible fiber) that favor the growth of beneficial bacteria colonizing the colon. Probiotics include a variety of fermented foods containing live active bacteria. Each woman who chooses to change their diet receives counseling from nutritionists in the study. pregnant_woman_3

How to enroll and participate in the MELODY Trial

The research team is looking for both healthy controls and women with Crohn’s disease. The MELODY Trial is a national study; anyone living in the continental United States can participate. Whether you’re on medication, in remission, or experiencing active disease—this study is open to everyone.

The study will include 200 women over the next two years. If you are not yet pregnant but are planning a pregnancy, you can also get in touch with the study team now, and then start participating once you are pregnant.

Women who are interested in participating should contact the study team at themelodytrial@gmail.com or by calling 347-620-0210. You can also register to be contacted by our team by filling out this form: https://www.umassmed.edu/nutrition/melody-trial-info/

Participants will be compensated $200, which is paid in installments throughout the study period. Participation begins in the third trimester of pregnancy and involves stool, saliva, vaginal swab, cord blood, and breast milk sample collections as well as health history questionnaires and diet assessments. There is no cost or travel required.

“We will send participants thorough instructions about how to collect and ship each sample. We also provide all the tools needed to collect and ship samples. All stool, saliva, breast milk, and infant diaper samples will be collected at home by participants. Vaginal swab and umbilical cord blood samples will be collected by doctors, midwives, or other trained health care professionals. We will coordinate directly with your provider, or we will give you the tools and instructions needed to coordinate with them directly.”

From one IBD mama to another: My call of action to you

As a mom with Crohn’s who has been pregnant three times and who has two kids ages 2.5 and 10 months, I can’t reiterate enough the importance of participating in research like this.

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Photo credit: Jennifer Korman Photography

Not only are you benefiting your baby, but you’re contributing to research that helps paint a clearer picture of what we can do to lower the incidence of IBD in future generations. Results from the study are expected to be complete and ready for sharing in three years. Let’s join together and help push this research along so future women and families have greater peace of mind and understanding as they bring life into this world.

 

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.

 

A letter to my daughter, from your mom with Crohn’s disease

My sweet daughter,

In less than 30 days you will be safe in my arms. It’s felt like a long journey to get to this point with you. Much like your brother, you’ve made me feel a sense of health that I never knew was possible. Through the creation of you and your life, I’ve found a deeper appreciation for my own.

You’ve silenced a disease that has ravaged my body for more than 13 years. _F6B0473You’ve reminded me of what is possible and what I’m capable of. You’re already an inspiration to me and you don’t even know it.

For as long as I can remember, I’ve hoped and dreamed for you. A daughter. A best friend. A relationship so sacred, so unique. Words don’t do justice for how anxious and excited I am to bring you into this world.

Just like your brother, you will see me struggle some days. Not with being your mom, but with my Crohn’s disease. It pains me to think about making you worry about my health or question when my next flare up will be, as leaving you and Reid for an extended hospital stay will be so tough on me and on our family.

I never want you to feel scared or question my resilience. Instead, I want to show you how strong I am and instill a positive attitude in you from a young age. You will witness the highs, the lows and everything in between that comes with chronic illness, but trust that mama will always come out on top. _F6B0340You and your brother serve as my greatest motivation to push through the pain and be strong. You’ll see how your dad loves and nurtures unconditionally and rises to every challenge that comes my way.

Here are my hopes for you.

A kind, happy heart. Always try and see the best in others, rather than coming to quick judgement. Soak in the happiness bestowed upon you each day and light up the room with your smile, even when the going gets tough.

A confident attitude and demeanor. Stand tall and be proud of who is looking back at you in the mirror. Love yourself for all that you are and don’t let any person make you question your worth.

A compassionate, empathetic mind. Recognize the pain of those around you, and be supportive, thoughtful and caring. Be a positive light in the lives of others.

A patience with yourself and others. Understand that life has setbacks, disappointments and pain, but that God has a plan for you. Trust in it, even when the path seems daunting or overwhelming. Try and use each challenge that comes your way as a moment to learn and grow.

A strength to use your voice. Never be afraid to speak up, be heard and communicate your hopes, dreams and fears. Feel empowered by your voice and know that everything you say and think matters._F6B0313

A life without Crohn’s disease. While there are many qualities I would love to share with you—I hope and pray you stay healthy and never receive an IBD diagnosis. I will be there every step of the way, should that ever happen. I’ll be your best advocate and your closest confidant in sickness and in health, and always.

See you soon, my sweet girl. My rainbow baby. My darling. Someday you’ll know how you’ve made my heart fill with such joy and immense gratitude.

Mama

Navigating IBD & Pregnancy: Difficulty deciphering aches and pains

Pregnancy is a magical miracle. You witness the creation of life within yourself and see your body transform in ways you never knew possible. When you live with a chronic illness like Crohn’s disease and experience a pregnancy, there are added layers. A layer of worry. A layer of concern. A layer of wonder. When you have a chronic illness that can flare up at any given moment—it’s one thing to have the ticking time bomb feeling when it’s just you…it’s entirely different when you have a family to care for and a baby in your belly.

IMG_3453This Friday, I’ll be 27 weeks complete with my baby girl. My January due date is quickly approaching. Time is going both fast and slow. For the most part, my Crohn’s has behaved itself. But, there have been multiple times where I can’t seem to decipher if what I’m feeling is related to pregnancy aches and pains or my IBD. The burning and gnawing feeling in my abdomen often feels so reminiscent of the beginning of a bowel obstruction that I can’t help but fear the worst.

With my son, Reid, I was lucky enough to never have a contraction, never dilate or efface and went into my scheduled c-section without having any pain. This time around, I’m not so sure things will go as smoothly. How are we supposed to determine the difference between round ligament pain and Crohn’s? What about a contraction and Crohn’s? So many IBD mamas who have gone through a flare and labor say the pain is very similar, if not worse than delivering a child. Yeah. Take that in for a second.

Even after more than 13 years of living with Crohn’s, I feel like a fish out of water at times with this pregnancy. It’s as if I’m relearning my body and the relationship I have with IBD all over again. IMG_3451It’s difficult because every single pregnancy is different and so is every single person’s IBD. My OB tells me that with a contraction the pain will come and go, and I’ll be able to see a pattern and time it, whereas Crohn’s pain will be constant.

I’ve noticed a few times in the last week that the pain will exacerbate if I eat something while my abdomen is burning. To me—that would be more Crohn’s, than pregnancy. I know I can’t be the only chronic illness mom who feels challenged by pregnancy symptoms and disease symptoms.

All of this is happening now, then there’s the looming fear of the all too common postpartum flare. I was nervous after my firstborn and have luckily stayed out of the hospital his entire life (he’s 18 months!), but this time could be different. You just never know when the disease is going to rear its ugly head.

IMG_3452My advice to myself and to all of you who may be dealing with these same fears and thoughts is to listen to your body. Be mindful of when you hurt, why you may be in pain and how often it’s taking place. Don’t turn a blind eye to your aches and don’t feel like a bother to your GI or OB. Reach out to your healthcare team and alert them when you have a concern, so they are aware of what’s going on. This is not a time to internalize your pain. This is a time to be vocal, be your own best advocate and start being the strong IBD mama that you are for your unborn child.

The story behind the announcement: Celebrating our rainbow baby

On Mother’s Day we received the best news. I woke up, took a pregnancy test and found out our little rainbow baby had arrived. Two months prior, I endured a miscarriage. It’s something I don’t talk about often, but something that still stings.

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Mother’s Day 2018-the day we found out we were pregnant.

Ironically, I would have been 13 weeks on Mother’s Day. We had planned to make the news public on that day. God had a different plan for our family and brought in new life that day instead. Each time I say “baby number 2” I hesitate, since it’s actually baby number 3.

For me, miscarriage was worrisome, because I didn’t want the stress or grief to throw my Crohn’s out of control. I didn’t want to jeopardize my health for the next pregnancy or for my family. I hesitated in whether to share about this experience, but know my words will help to shed light on something so many women go through, often in silence. As a chronic illness mom of a 15 month old son, I not only want to share the happy times, but also let you know my days are not all sunshine and rainbows. If you are reading this and yearning for a baby, know my heart is with you. If you’re concerned about your body that’s stricken with a chronic illness creating life, you are not alone. When you see a pregnancy announcement on social media, understand there may be a backstory you are unaware of. announcement

Pregnancy while battling Crohn’s disease, or any illness for that matter, is a constant state of unknowns. You never know if your body is going to fail you or how your medications are going to impact your unborn child. It’s a heavy weight to hold. The symptoms of pregnancy coupled with Crohn’s symptoms are a lot to handle, especially while chasing a toddler around. The fatigue is amplified ten fold. The benefit of pregnancy symptoms is that there is an end in sight, you know you’re feeling poorly for the best reason possible. It’s so much different than chronic illness, which is never-ending.

The key for me is staying proactive with my health. Recognizing when I need to slow down. When I need to lean heavily on my husband for help and trusting that my son will be “ok” if we spend a low key day at home. I find since I’ve brought a life into this world before, I am more confident in my body and what it’s capable of. I’ve witnessed that despite taking a biologic my entire first pregnancy, my son is the picture of health. It’s my hope that’s the case for our baby girl who is due in January.

As women and as mothers, there is so much to consider when going into a pregnancy and starting a family. My hope is that you don’t allow your chronic illness to rob you of your dreams, if this is what you aspire to have in your life. I use a healthcare team approach and seek care from a regular OB, high-risk OB and my gastroenterologist. blogbabyEveryone works together to watch me, the baby and the pregnancy every step of the way. We get an ultrasound once a month! I see that as a perk!

I’m so excited for what’s ahead for my family and hope and pray the second and third trimesters go smoothly and are flare-free. Thank you for all the support, well wishes and kind words. I share my story because I want to touch lives. I want to show that motherhood is possible, despite illness and that you too can find your rainbow.