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.

IBD Motherhood Unplugged: Completing My Family Through Surrogacy

When IBD mom Jessie Magaro was pregnant with her first child, she knew early on she wouldn’t be able to carry another baby herself. Between the hormones from IVF and her Crohn’s disease raging, there was no way her or her doctors felt comfortable embarking on another pregnancy.

Before she got pregnant, Jessie had been in remission for more than 12 years. With pregnancy and IBD, there’s the ‘rule of thirds.’ One third of women will see their symptoms improve, one third will stay the same, and one third get worse. Unfortunately, Jessie fell into the last category. Since having her daughter, Mary Ligon on New Year’s Eve 2018, Jessie’s gotten an ileostomy and has grappled with her Crohn’s being out of control. When her and her husband started thinking about baby number two, she knew surrogacy was her safest and smartest option.

“My daughter Millie (born in April 2021) needed me more to be there as her momma once she got here than she needed me to carry her. Not only was my baby safer, but I was in a much better position health-wise to care for both my daughters.”

The Surrogacy Process

Surprisingly, the FDA controls surrogacy and has specific requirements for the IVF part of the process. Jessie recommends making sure your fertility clinic is well-versed on how everything goes down. Surrogates and biological parents go through medical testing and psychological evaluations prior to the transfer of the embryo.

“This was probably the hardest part for me mentally and emotionally. I was so frustrated and hurt that I had to pay someone a pretty penny to tell the government that I was mentally ok to have my own baby. It was just pouring salt into an already large and festering wound. Can you imagine having to have a stranger tell you if it was ok or not for you to bring your own child into this world?”

It’s important to note that surrogacy laws vary state to state, but in Georgia (where Jessie lives), you must adopt your baby back from the surrogate, even if the child is 100% genetically yours.

“You hire an attorney (one for yourself and one for your surrogate) and they actually file a lawsuit claiming your parental rights to the unborn baby on your behalf. I had to go before a judge and field questions on why I was pursuing surrogacy and whether or not I felt my husband and I were able to take care of the child once it was born. Again, insult to injury.”

There are several ways to go about surrogacy:

  • You can hire an agency to find you a surrogate and manage the process
  • You can use a friend or family member (they will still have to be medically and psychologically cleared by the clinic)
  • You can try to find one via word of mouth in your community.
  • There are tons of Facebook groups where you can “match” with one (local, regional, national, interest groups i.e., christian, altruistic, low comp, natural minded, etc). 

“Normally, you would be able to attend all OB appointments with your surrogate, but Covid made things a little trickier for us. We were unable to attend the transfer, which was sad, but I was able to go to a fair amount of the appointments. My husband unfortunately wasn’t allowed to attend any. We both were allowed to be in the room for the birth though and that was the most important thing to us.”

The experience of having a surrogate

Jessie says had she not been able to carry her first child that she feels surrogacy would have been harder on her. She feels so fortunate that she was able to experience pregnancy once.

“I had already gotten to a place mentally and emotionally where I knew the only way to get my daughter here safely was by having someone else carry her. I wasn’t ever triggered per se by seeing a pregnant belly because I knew she was safer inside our surrogate. I had so much PTSD and trauma from my first pregnancy as well that looking at another pregnant person never made me think “oh man I wish that was me again” if that makes sense. I did/do still deal with mourning though over how pregnancy played out for me and that I was unable to carry safely again. I also find myself spiraling occasionally thinking about how much it cost us to get our children here versus someone who could just have them themselves naturally. It’s been a massive financial burden/sacrifice for my husband and I (but oh so very worth it).”

The Financial Cost of Surrogacy

When looking into surrogacy, Jessie tells me you can ballpark around everything costing $100,000. There are many factors involved that play into whether that number is more or less depending on if you’ve already gone through IVF and have embryos. Much like IVF, there are some grants available for surrogacy, though much less common.

“The ways to bring the cost down for surrogacy would be to do an “independent journey” like we did where you don’t use an agency. You can also use a surrogate (whether it’s a friend, family member or even a stranger) who does not want to be compensated or wants very little. Medical bills will bring the cost up or down significantly depending on insurance plans and same with your legal fees as those will vary based on the surrogacy laws in your state.”

Defending her Decision

While Jessie says it was empowering to make the decision to utilize a surrogate to do what was best for her health and for her family, it’s been frustrating to constantly feel like she still needs to defend her decision to other people and even some doctors.

Whether it was …

“Aren’t you worried about having another child when you’re so sick?”

“Why don’t you guys just adopt??”

“Aren’t you worried the surrogate will want to keep the baby?”

“Aren’t you worried she won’t know you/you won’t be bonded to her??”

“Just one kid is great you should just be ok with having just the one”

etc …

“I know most of the time these comments don’t come from a place of mal-intent, and I try to use them as an opportunity to educate if it feels productive, but everyone is different what they’re open to accepting in their heart and their mind. In my mind, the girls are going to know the stories of how they came to be eventually, and hopefully they’ll see how wanted and loved they were. How unbelievably hard they were fought for. And how many people played a part in bringing them into this world.”

Managing IBD and Motherhood

Prior to looking into surrogacy, Jessie and her husband had to discuss at length if they would be able to handle a second child with her IBD. They also had to loop in their families knowing they would need their help when they couldn’t manage everything on our own.

“My husband and I say all the time, in all seriousness, that my illness has become a third child in a sense. There’s not a day, hardly an hour, that I don’t have to think about my Crohn’s or manage something with it in some way. It’s a difficult balancing act every day when I wake up trying to prioritize who needs the most at what moment (my kids, myself, or even my husband). I deal with a lot of guilt and grief with that. That I’m not the mom or wife I want to be … that I’m not able to give everyone what they need and deserve.”

Jessie often thinks of the oxygen mask analogy and says as an IBD mom it’s imperative to make sure her proverbial mask is on and secured first before she can help anyone else, which is very hard to do as a mother. 

Meeting Millie the Day She Was Born

It makes Jessie emotional to think about what it was like to walk into the hospital with her husband and know they were about to meet their daughter. They were able to be in the delivery room when Millie came into the world.

“I had an overwhelming sense of gratitude looking at our surrogate knowing what SHE went through and had sacrificed to get her here. All the anxiety I had been suppressing for months and months from having someone else carry her, to giving up all control, to doing it in the middle of the pandemic, to being so scared something would go wrong like it so often had for us in the past. It just all came pouring out of me uncontrollably as she was pushing. The moment she was placed in my arms it just felt like a lightning bolt connecting us. I felt bonded to her instantaneously. She was mine and I was hers and there was nothing on this earth I wouldn’t do to protect her.”

Jessie knew from the start of this journey that her surrogate would be a lifelong friend. Their families grew close through the process, and they live nearby one another. She says she’ll always hold a deep place in her heart for her and is incredibly grateful to be a family of four.

Six years since my bowel resection: What I wish I knew then

Six years ago, I was shaking like a leaf getting rolled into the operating room for bowel resection surgery. Six years ago, I felt overwhelmed by the thought of my body getting cut into, by the realization of my body having scars, by the fear of the unknown, and feeling as though I had failed myself and those close to me. The first decade I had Crohn’s disease, I always thought of surgery as the last resort. With each flare up and hospitalization, my biggest worry was needing a surgery of some sort. I constantly wondered about becoming one of the 50% of people with Crohn’s who ultimately end up with surgery. August 1, 2015, I became part of that statistic, when I had 18 inches of my small intestine, appendix, ileocecal valve, and Meckel’s Diverticulum removed. Surgery went from being an option to a necessity.

Looking back now—I want you to know if you need surgery, it’s not a reflection of failure on your part as a patient. While it may feel like the world is crashing down around you, you’ll see the pain, the fear, the recovery—it’s all fleeting. Time waits for no one. Before you know it, you’ll be like me. I blinked and it’s been six years. The scars and memories remain, but as more and more time passes, they become less of a big deal.

I’ve had several fellow IBD’ers reach out with questions recently about bowel resection surgery—everything from bleeding to bloating, asking me about my experience, and surprisingly it’s hard for me to remember those details!

I credit bowel resection surgery for removing a decade of disease from my body (not curing me) but giving me a fresh start and ultimately putting me into surgical remission. Remission that has been maintained for six years now. Prior to surgery, the first ten years I had Crohn’s, I was never in remission. Since surgery I was able to get to a place in my disease journey where family planning and pregnancy were possible without any complications or waiting. I’ve been able to bring three babies into the world and haven’t needed to be hospitalized for my Crohn’s since becoming a mom. I went for a walk with my husband and three kids yesterday (August 1, 2021) and found myself reflecting and feeling a great deal of gratitude as I thought about the stark contrast of where I was six years ago in comparison to now.

August 1, 2021. 6 years post-surgery.

Tips for Surgery: Before and After

Take a before photo. The day before my surgery, I took a photo of myself standing in front of the bathroom mirror in my bra and underwear so that I could remember what my body looked like before it had scars. I took the picture for myself and have never shared it. When I look at the picture now, I see a girl with sadness in her eyes and a longing for days without pain. I see a girl who is petrified of what could be and praying for relief. I see a thin, untarnished body on the outside, but one that is very sick on the inside. I highly recommend you take a photo of yourself prior to surgery so you can capture that moment. One day you’ll look back on that time and be able to see how far you’ve come. You won’t think of your scars in a negative way, but rather a reminder of all you’ve overcome. I don’t even notice my scars when I look in the mirror now.

Communicate with your surgeon. If your surgery isn’t an emergency and you have some time to talk with your surgeon, make sure you do. Talk with your care team about what the surgery will entail—how many inches of intestine will be removed, if an ostomy is a possibility, where they will do incisions, etc. This will help you mentally prepare for what’s to come. My surgeon came into my hospital room prior to my bowel resection and asked me where I would want the incisions. We knew I would have the laparoscopic incisions, but we discussed a horizontal vs. vertical incision as well. I said I wanted the incision to be as low as possible—he told me he would do a “c-section incision” …which worked out wonderfully for me. I know of many people who have had a couple inches of intestine removed and have a large vertical scar (I had 18 inches taken) and that type of incision was not necessary.

Once you’ve had surgery push yourself to get up and get moving. Don’t overdo it, but every step, every movement will help you heal. Before you know it, you’ll be able to bend down and tie your shoes, walk a little further, and stand a little taller. After my surgery it was a struggle to walk around my family room, then before I knew it, I was walking outside…each day making it to one house further around the block. Before I knew it, I was able to take long walks. When you’re laughing, coughing, sneezing, or driving, have a small pillow nearby to hold against your incision, this will alleviate a lot of the pain. The first two weeks is the hardest. Once you hit the 2-week mark, you’ll feel a ton better. You’ll be able to drive and get around with minimal pain. Just hold on to that thought those initial days when it’s emotionally and physically pretty brutal. I remember crying my first night at home because I was so overwhelmed by the pain and my inability to get out of my own bed. At the time a family member was battling ALS. Her fight and knowing that her health was deteriorating daily, while mine was improving with each hour that passed, gave me perspective and brought me back to earth.

Trust in your care team. Once you have surgery, then the priority is to determine how managing your IBD will look moving forward. I, like many, had this false sense of security after surgery that I felt so great, I wouldn’t need to go back on my biologic…or any medicine for that matter. After a lot of tears and discussion, I followed my GI’s recommendation to re-start Humira and add a bunch of vitamins and supplements to the mix (Vitamin D, Calcium, Folic Acid, and a prescription prenatal). I give my GI a lot of credit for being proactive and having a “come to Jesus” talk with me, if you will. She warned me my Crohn’s disease is aggressive and by going med-free, my risk of being back on the operating table 3-5 years down the road would go up exponentially. Six years later, I’m so glad I listened.

Be patient with your healing. I’ve had three C-sections and bowel resection surgery, and the recovery is very different. I try to explain this to women who come to me with questions wondering about the two. With a C-section you have incisional pain/burning, but with an IBD-related surgery you also have to heal from the inside, too. Organs are cut, removed, and reattached. Your digestion needs to recalibrate. It’s a lot more intense of a recovery than a C-section (which I’m going through right now). Be patient with your body. Ease back into normal activities. After my bowel resection surgery, it took me nearly 8 weeks to return to work full-time at my desk job. Prior to returning to the office, I worked half days for two weeks from home because it took time to heal enough to sit upright in a chair. As your digestion re-works itself, it’s not unusual to have an accident or not be able to ‘hold it’ the same as you could prior. For me, this was temporary. But in those initial weeks and months, it’s a good idea to have a change of clothes in your car or packed with you and to be mindful of where the nearest bathroom is. I had one accident during my recovery—luckily, I was home alone (working a half day), it was mortifying, and I was by myself. Don’t try and rush back to normalcy, give yourself time to heal mentally, physically, and emotionally.

3 weeks post-op, laughing through the pain during engagement photos.

If you find out you need surgery—it’s understandable to be upset. But also give yourself a chance to think of all that could be possible. Try and focus on the promise of how surgery could help you get into remission or at least help you in having more “feel good” days. It’s normal to grieve and to be tearful and fearful, but I hope you find comfort in knowing once you wake up from surgery, you will be on the road to a recovery that paves the way for feeling empowered against your illness. And from that point forward you won’t be as scared of future surgeries because you’ll have a better idea of what to expect and a better understanding of how it feels to be well after being in pain for so long.

From IBD patient to IBD mom: What I’ve learned

I wish when I was diagnosed with Crohn’s in July 2005 that I would have had a look into the future to know that the same body that has gone to war with me time and time again would also bring three miracles into the world. 

Wednesday, July 14, 2021 my family grew to five and I became an IBD mom to three kids, four and under. Our latest addition, Connor Christopher, completes our crew.

On the day of my scheduled C-section and Connor’s birth, I felt overwhelmed with emotions. So many thoughts and feelings came to mind—from knowing I would never be pregnant again to recognizing that from this point forward I would never feel the deep remission I experience when I carry a life inside of me.

There are so many sharp contrasts in what pregnancy and deliveries have meant in comparison to life with Crohn’s. 

The unpredictable nature of Crohn’s but having three scheduled C-sections all go to plan. 

The way it feels to head to the hospital for a good reason.

The fact that my Crohn’s comes up as an aside when conversing with medical professionals and my pregnancies and being a mom comes first as my “identity.”

The perspective and strength IBD has given me when it comes to coping with painful pregnancy-related issues like SI Joint Dysfunction, Symphysis pubis dysfunction, acid reflux that required prescription medication, and C-section recoveries.

The incredible pride and joy I feel knowing that the girl who found out she had a debilitating lifelong disease 16 July’s ago, has carried three pregnancies to term and has a family of five to show for it.

If you’re like me and have dreamed of one day being a mom, explore all options to get there and don’t let your IBD hold you back. You are not less than because of your chronic illness, you are more capable than you think. Your body may surprise you in ways you could never imagine. To me–my children are proof of all that’s possible despite chronic illness.

When I was 21 and found out I had Crohn’s disease, one of my greatest fears was the uncertainty of what my future would look like personally and professionally. While the unknown was daunting and overwhelming, I never really allowed myself to think of not becoming a mom because of my disease. Instead, I shifted my focus to recognizing that getting there may take some detours and careful planning.

Thank you for all the well wishes for my family over the years. Your kind words, interest, and prayers, have meant the world to us and helped me to realize that even though I’m an “IBD” mom… I’m so much more.

IBD Motherhood Unplugged: Why My Son Will Flip the Script on July

July has been my least favorite month for the last 16 years of my life. It’s the month I was diagnosed with Crohn’s disease. The month I had an abscess the size of a tennis ball in my small intestine. The month I was put on a biologic medication. The month I had a bowel obstruction that led to bowel resection surgery. You get the picture. But now, it’s about to be the month I give birth to my third child. Baby boy is about to flip the script on a month that previously brought dread. Instead, I can focus on celebrating his new life and all his birthdays and milestones for years to come.

Photo credit: Heather Roth Photography

As a woman with IBD, motherhood has continually provided me with reminders of all my body is capable of despite my chronic illness. It’s shown me what once may have seemed unattainable, is possible. Motherhood is a constant reminder that my body hasn’t always been at odds with me. That despite the challenges and the pain all these years, it still afforded me the opportunity to carry healthy babies to term. Rather than feeling like my body is the enemy, motherhood has made me think of my body as my ally. We’ll have our ups and downs forever, but for 27-plus months it’s been a safe haven for my children. I’ve enjoyed flawless pregnancies and deep remission. It’s given me a chance to feel like a “typical healthy” woman, if only for a moment. Pregnancy has felt like a security blanket wrapped around me, and is soon to be no more. With that, comes an immense amount of gratitude, as well as anxiety, as from this point forward it’s just me and my Crohn’s…no buffer.

It feels weird going into this month of July not worrying about what could be, but rather being excited about what’s to come. When I was younger and prior to getting married, I avoided making plans in the month of July—especially life changing ones! My wedding, vacations, etc. were all coordinated around this month because I didn’t trust the way my body could blindside me.

Preparing for the shift in health

While I am ready for my son to be here and over the discomforts of pregnancy, a part of me is sad that I’ll never feel this well again. Within days of delivering Reid and Sophia, the gnawing abdominal pain associated with IBD crept back into my life before I even had a chance to bring my babies home. I expect the same will happen this time. While it was discouraging then and will make me feel the same now, I’m hopeful the shift in hormones won’t throw me into a postpartum flare and that I’ll find comfort in knowing from this point forward, every medication, every procedure, and every hospitalization will be done without a life growing inside of me.

Over these last nine months I’ve enjoyed eating popcorn with my kids for the first time, drinking a cup of coffee without a need to use the bathroom right after, and nearly 40 weeks of baby flutters and kicks instead of pain. It’s been a great run. I hope my experiences through family planning, conception, pregnancy, and motherhood provide you with an understanding that IBD doesn’t mean you can’t have a family. While many sadly struggle with infertility, complications, or not physically being well enough to carry a baby, it’s very possible that you can. Whether it’s stories like mine or the opposite, remember each of our journeys is unique. Don’t base your experience and capabilities on someone else, but when something or someone inspires or empowers you to go after what you dream of, hold on to that.

Baby boy will not only complete our family but serve as a constant reminder of all that is possible. While my Crohn’s has brought a great deal of heartache it’s also allowed me to gain a unique perspective and to never take life’s miracles and triumphs for granted.

“My dad and husband are both GI’s and I have Crohn’s disease”

Imagine having a dad who’s a gastroenterologist and a husband who is a GI fellow… and having Crohn’s disease. For 32-year-old, Lauren Gregory, that’s her reality. She was diagnosed with Crohn’s in 2008. Lauren is also a doctor herself and an IBD mom! When she’s not taking care of pediatric patients in the hospital, she’s enjoying time at home with her husband, Martin, and 6-month-old son, Connor. In light of Father’s Day, this week on Lights, Camera, Crohn’s, we share about how the most important men in Lauren’s life have helped her cope and overcome challenges IBD has presented along the way.

Through the eyes of Lauren’s dad

Late one night during Lauren’s college sophomore Christmas vacation from college, her mom called her dad with words he will never forget. She said, “Lauren is having terrible abdominal pain and is on the floor.” After a quick exam and seeing how tender and distended her abdomen were, he knew it was time to head to the closest emergency room. A CT scan showed massive gastric dilation and small bowel thickening. The surgeon was called, and he agreed it was likely Crohn’s.

Lauren was discharged home on a liquid diet with outpatient GI follow up after New Year’s. Unfortunately, her concerning symptoms persisted and her dad called a friend who was a gastroenterologist. He directly admitted her.

“When Lauren was admitted to Barnes Jewish Hospital in St. Louis while in college at Wash U, her then boyfriend (now husband) sat by her bedside for days as she underwent scopes and a small bowel series. We knew he was a keeper then. As parents we always worry about our children. As a gastroenterologist, we may worry more when our children have GI issues. We are fortunate to have connections in GI which allowed Lauren to have prompt evaluation and ultimately a great outcome,” said Dr. Bruce Waldholtz.

Navigating love and IBD

Lauren met Martin in college. At the time, he knew he wanted to be a doctor, but he did not know what he wanted to specialize in. During internal medicine residency, Martin was torn between cardiology and gastroenterology. He ended up choosing GI and is about to start a one-year fellowship to get extra training in IBD and nutrition. (Small World Fun Fact: He is part of the same GI practice I go to in St. Louis!)

Martin says Lauren inspired him to choose gastroenterology and specifically focus on inflammatory bowel disease.

“Watching her go through what she did at such an important time in her life was inspiring. I was so grateful to her doctors taking such good care of her. I wanted to be like them.  I wanted to help people like her succeed in living a rich, enjoyable, and rewarding life. “

Lauren feels incredibly lucky to have found someone as supportive as her husband. A month after they started dating, she was hospitalized with a partial small bowel obstruction. The fact he didn’t leave her side throughout that vulnerable and scary experience meant a lot to her.

When Lauren was hospitalized for one week during her fourth year of medical school, Martin was going through his second year of internal medicine residency. They were married, but in a long-distance relationship at the time.

“During residency you can’t just take days off, and it is challenging to find coverage. Because of this I did not expect him to be able to visit, but he somehow did. This flare occurred as I was transitioning from Humira to Stelara. I have been extremely fortunate to have stayed in remission since then (2017).

How personal life impacts professional life

“Without question Lauren makes me a better doctor, especially with taking care of IBD patients. I can understand the anxiety behind the questions they have about medications and what to expect because we went through the same thing as a family,” said Martin.

Lauren says her IBD has given her a unique outlook in how she cares for patients as well.

“My experiences with Crohn’s have made me more empathetic towards my patients, and now that I am a mom, I have much for empathy for my patients’ parents. Spending extra time with patients is not always easy given that I work mostly in the emergency room, but I make a point to take the time to listen to my patients and their parents’ concerns and provide reassurance when appropriate. In my marriage, my husband answers my medical questions and has a realistic perspective of what patients go through.”

Gratitude for her dad and husband

“I realize how fortunate I am to have a father (and now a husband too) who is a gastroenterologist who can answer my questions and to help me navigate our healthcare system, especially insurance! When my gastroenterologist decided I needed to start a biologic, and recommended Remicade, my dad pushed for Humira so that I wouldn’t have to worry about scheduling infusions around my college class schedule or worrying about transportation when I didn’t have a car. At the time I had no understanding of how having a chronic disease would affect my life.”

IBD Motherhood Unplugged: Thriving with Crohn’s on and off the field

She’s an IBD mom who plays touch football and touch rugby in Australia (think rugby—for those in the United States, in touch rugby she kicks the ball). Diagnosed with Crohn’s disease five years ago, she’s thrilled to have reached remission. Bec Simson is a 33-year-old IBD warrior adamant about not letting anything stop her from pursuing what she hopes to achieve. Even though her disease has sidelined her through the years, motherhood and staying active through sports is a reminder of all she’s capable of.

“Some weeks it can be hard to find the time and energy to exercise. I play touch football competitively and socially– it’s like rugby but without the tackling. I play three times a week and then on the weekends I like to do my own fitness to keep up my strength, speed, and agility. I enjoy playing touch football because I use it to catch up with my friends – seeing my mates gives me the motivation to get up off the couch and exercise.”

Getting up off the couch and having not only the motivation to move, but also the energy, can be especially challenging when you live with IBD. Bec’s biggest challenge is trying to juggle work as a teacher, her athletic commitments, and life with her son Jackson, while also trying to find time to rest in between.

Being on immune suppressants and having a toddler who is almost 2.5 has been hard because he brings home many illnesses from daycare which I usually end up getting as well. Some days I am so rundown I just don’t have the energy to keep up with him, but I wouldn’t have it any other way. Jackson always knows how to make me smile.”

Reflecting on pregnancy with Crohn’s

Bec had a rough go of it with her pregnancy. Her Crohn’s flared multiple times throughout, resulting in three visits to the hospital due to severe vomiting and diarrhea. She was put on a course of steroids for each flare, which led to her son growing much faster and bigger than expected.

“Ultimately, I had to be induced two weeks early due to Jackson’s size. After 16 hours of labor, I had an emergency c-section. My incision from my c-section ended up bursting open while I was recovering in the hospital after delivery. An ultrasound showed my bowel was so inflamed, it had pushed through my internal stiches and formed a hernia that was sticking out of my stomach. I was rushed to emergency surgery that same day.”

Fast forward to present day and Bec is in remission. Her colonoscopy last month showed no signs of inflammation or ulcers. She credits this to Stelara (Ustekinumab), which she started this past October. So far, the biologic has helped control her disease and improve her quality of life.

Down the road, if she’s still in remission, Bec is hopeful she’ll be able to have another child.

The benefit of a supportive partner 

Bec is grateful for her supportive partner, Nick, who happens to play in the AFL (Australian Football). Not only is he empathetic about her battle with Crohn’s, but serves as someone who keeps her accountable with her workouts and is also passionate about staying in shape.

“We motivate one another to complete work outs and then reward ourselves with food and drink later! When I was younger, I used to overdo my training and push my body to its limit. I became burnt out, rundown, sick, and injured. My main piece of advice for the IBD community is to listen to your body and don’t be afraid to stop and take a break. Rest is just as important as training.”

Managing IBD and competitive sports

Bec says her Crohn’s disease often makes her anxious while she’s on the field.

“I had our State of Origin for ‘Touch Rugby League’ which attracted quite an audience and it was also being live streamed for everyone to see. I was extremely anxious leading into that tournament because I was worried about pooping my pants in the middle of the game and it leaking through my bike pants! I took some Imodium before my game, so thankfully that didn’t happen! However, I felt like I couldn’t play to my potential because I wasn’t feeling my best.”

While she feels fortunate to be in remission, she’s also realistic. She knows the symptoms and flares could return at any moment—and that it’s not a matter of if, but when.

“Sometimes I can be hard on myself when it comes to sport, but I just try and remind myself that I’m a 33-year-old mum with a chronic illness and I am grateful I’m still able to run around the touch field at my age. I can’t change things out of my control, all I can do is just go out there and give it my best shot.”

Follow Bec’s journey on Instagram: becs_IBD_journey

IBD Motherhood Unplugged: The peaks and valleys of raising three littles in a pandemic

For IBD mom, Suzy Burnett, reflecting on the past year and half of living through the COVID-19 pandemic causes her to feel flooded with emotions. She knew having three children under the age of five at age 41, while dealing with the ebbs and flows of Crohn’s disease, would be challenging. She delivered her son, Guy, just as COVID cases were starting to soar. Now, she’s able to look back on how her family adapted and thrived, despite the difficult circumstances of living through a global pandemic with a chronic illness. I’ll let her take it away…

Like many families, we’ve worn masks, stayed at home, literally have seen no one except our wonderful neighbors, and made sacrifices to ensure the safety of ourselves and others.  We made the difficult decision not to send our 5-year-old to kindergarten, rather, enroll her in virtual 4k from the confines of our home. Our 3-year-old also didn’t attend preschool a few mornings a week like we had originally planned. We have noticed the lack of socialization has impacted her the most. Our 15-month-old is just now meeting family and friends for the first time.  He takes stranger danger to a whole new level, but we know he’ll warm up in due time. 

My husband, like so many others, started working from home. What was once thought to be a temporary safety precaution, has become a permanent situation. He continues to work in a room without doors while the wee ones race around playing superheroes. Noise canceling headphones have become a lifesaver.  All of us together at home, day after day, month after month. Our bond has grown deeper, and our Burnett Party of 5 has survived. I can honestly say we live fuller, laugh harder, hold each other longer, and love deeper.   

Dealing with the lifting of the mask mandate

Just as we were beginning to get used to our personal version of Groundhog’s Day, the mask mandate was lifted.  This is a huge milestone, but with that brings excitement along with anxiety. My husband and I are both vaccinated, but our 3 young children will have to continue to wait their turn. To say we’re trepidatious about starting to acclimate back into society is an understatement. We’ve been in our little bubble on Welcome Drive for more than a year.  I don’t think things will ever get back to “normal,” per say, but we’re looking forward to what our “new normal” will be. It’s a new beginning, a fresh start to be more present, and we have the opportunity to give precedence to things that matter most in life. Things will be a little different than before, and we will always remember and carry the weight that was and will forever be COVID. 

We will continue to have our groceries delivered as well as basic necessities, because it’s unclear who is vaccinated, and I’m not going to rely on the honor system of strangers to keep my kiddos safe. However, I am beyond the moon ecstatic that our girlies will both be doing outdoor soccer and playdates with other vaccinated families. My husband will continue to work from home, but this is a change we welcome and greatly appreciate. It has given us time as a family we never knew we were missing. Our oldest daughter, Lucy, will finally be attending kindergarten…….wait for it….IN PERSON. I am so proud of her. She’s sacrificed so much these past several months. She’s handled herself with grace and class far beyond her years.  We’re planning our first family trip in over two years, and I am completely overwhelmed at the mere thought of the happiness this will bring.

Coming out stronger than before

It has been months of peaks and valleys, but our mountain remains strong.  On top of enduring the pandemic, we lost our family cat, Miles. He was a furry friend to our littles when they couldn’t see their own friends. My dear Grandma Connors was called amongst the angels, and now she protects us from above. I also recently almost lost my sister due to a post birth hemorrhage, but now she rests safely at home with her baby boy. And I am recovering from a nasty bout of C.difficile. Yes, the one time I left the house I picked up a bacteria from the hospital.  Through it all though, we’re stronger than ever before because of our strong family foundation. 

My point in saying all of this is that we all go through our own struggles. Life is so unexpected, and often we can’t choose what we’re dealt. We can, however, choose how we handle the storm. We’re so grateful for our health, happiness, and each day we’re given. Take NOTHING for granted because every day is a gift.  Everyone has been impacted one way or another these past few years, and now it’s up to you to see where your ship will go as you navigate life with IBD and in general.  As the tides of the ocean swiftly change, so will the moments in life. Savor the moments.

Connect with Suzy on Instagram: @crohniemommy

Check out her blog: Crohnie Mommy

IBD is Not Your Fault

You did nothing to cause your diagnosis or your disease. Read that again. It’s not your fault. No matter what you may see on social media or hear from friends or family, those of us with Inflammatory Bowel Disease did not live “incorrectly” or do anything damaging that “sparked” our chronic, autoimmune issues to come to life.

I was incredibly disheartened recently by a post on Instagram that in so many words claimed that bad habits in life led to a man’s Crohn’s disease. He made blanket statements about how medication and surgery are not necessary and that it just takes a long time and reflection to reverse the damage he caused on himself after years of smoking, binge drinking, etc. The post was not only on his own feed, but also shared by a community IBD page with more than 8,000 followers. After days of endless comments from those angered by his assertions and claims, the post was taken down and the patient “advocate” made his Instagram private, but the damage was already done.

Hold up—what’s with the blame game?!

You may wonder why patient advocates like me get their feathers ruffled by claims like this. I can tell you why. I, along with so many of my counterparts in the IBD community, work tirelessly to educate and inform not only those with Crohn’s and ulcerative colitis about the patient journey, but also caregivers and friends. When misinformation is disseminated it sets the clock back, bigtime. It further stigmatizes our illness, especially when the false statements are said by someone who lives with IBD. Not only does it hurt those grieving and trying to come to terms with their lifelong diagnosis, but it’s a direct attack on those diagnosed as pediatrics and those who did everything by the book (ate well, exercised, got lots of sleep, managed stress, etc.) and STILL got IBD.

If there was a magic bullet or diet that helped “cure” or manage all of us, we would do it. If there was a way to prevent IBD, people would do it. Crohn’s and ulcerative colitis aren’t like lung cancer, which is sometimes caused by smoking or diabetes which is sometimes caused by being overweight or liver disease which can be caused by excessive drinking. IBD is complicated and mysterious. There is not a behavior or habit that is associated with possibly “getting it” one day. The two known factors—hereditary and environmental—leave much to the imagination. I personally have no family history. I was a picture of health until the two months leading up to my Crohn’s diagnosis in July 2005. It felt as though a light switch went off and my world went from being healthy and able-bodied to being chronically ill.

You did nothing wrong

If you’re reading this and wondering what you did to cause your disease, the answer is nothing. If you’re reading this as a parent and feel as though you could have fed your child less processed food or breastfed them instead of giving formula or shouldn’t have had your child vaccinated, please stop believing that. I know we all want a reason. We all want answers and some clarity as to the why—but, at the end of the day, does it really matter? Focusing on the why doesn’t help us focus on the how. HOW are we going to get through this? HOW are we going to manage our disease and live a full life? HOW are we going to cope during flares and periods of remission? HOW are we going to navigate the unknown and thrive? HOW are we going to find the right treatment plan? HOW are we going to target our triggers and learn what to avoid? Focus on what you can tangibly do to improve your patient journey and less on the coulda, shoulda, woulda’s, because just like each case of IBD is unique, so is each back story.

Here I am as a little girl. Long before being diagnosed at age 21. This little girl did nothing to deserve or cause Crohn’s disease.

Stop the finger pointing and the blame game. Stop making the medical community out to be the bad guys and the adversary. Stop acting as though those who depend on medication and need surgery failed in any way.

Start collaborating with your care team and finding physicians who listen and genuinely care about the approach you wish to take to manage and treat your disease, while also understanding that a holistic and “med-free” approach may not be feasible for your type of disease process. Start getting involved and educating yourself about how IBD manifests and the complicated nature of not only Crohn’s and ulcerative colitis, but also the extraintestinal manifestations and mental health aspect that are often not talked about. Even if you’re on medication or have had surgery you can still take whatever measures make you feel better in a complementary way. It’s not all black and white. There’s so much gray area. You can be on a biologic and still try any “elimination diet” you’d like. It’s just a matter of doing what works best for you, without pointing the finger or demeaning others in our community. Start connecting with those who live your reality and lift you up, rather than make you feel like you’re taking the easy way out.

This is 21-year-old me. There were moments where I felt very sick while on this Spring Break trip my senior year of college in March 2005. I attributed the abdominal pain to traveling and eating different food in the Bahamas. Little did I know four short months later I’d receive my Crohn’s diagnosis.

I know that if my 21-year-old self came across posts on social media claiming I caused my Crohn’s and that I could “heal my gut” on my own, I may have believed it. I can tell you nearly 16 years into this, I know without a doubt that is not the case. I am not a failure for taking medication, needing surgery, or trusting my physicians. I credit my 5.5 years of remission to being a compliant, proactive patient who believes in science, educating myself on the facts, and realizing that this disease is bigger than me and a constant learning process. I don’t need to know my why because I’ve done a damn good job of discovering my how’s and you can, too.

He made me an IBD mom four years ago…here’s what I’ve learned

Four years ago, today, I became a mom. Our son Reid Robert was born and placed into my arms for the very first time. Like any parent, especially one with a chronic illness, those initial moments were emotional and overwhelming in the best way. A wave of relief rushed over me as I lied on the table after my scheduled c-section, grateful my body that had fought Crohn’s disease since 2005, had brought a perfectly healthy baby boy into this world. But I was also nervous about my abilities as an IBD mom and what the journey of parenthood would look like as I juggled taking care of myself and this tiny little human. How would my life with a chronic illness and as a mom play out?

Fast forward four years. I am now a mom of two, with a baby boy on the way (24 weeks tomorrow)! Over these last 1,460 days, I’ve learned and grown a great deal both personally and as an IBD patient. Today—I share that perspective and knowledge with you. Perspective and knowledge, I wish I had when I first became a mom and what I’m continuing to learn along the way.

  1. Fed is best. There is so much pressure on how women choose to feed their babies. It’s ridiculous. I breastfed Reid the first three days and he had formula from that point forward because I was nervous about my biologic. The second time around, I did more research, and chose to breastfeed my daughter. Our journey lasted for six months (my milk supply ran out once I got my period). I supplemented with formula. I’m hoping to nurse our final baby when he’s born in July. That being said—no matter what you choose, it’s your choice. Your baby will thrive. Don’t beat yourself up over it. Drown out the judgement and speak up if someone questions your decision for you and your baby. For me, breastfeeding is a labor of love. I’m not going to act like I enjoy it, because it was hard for me. It’s not something that comes natural for all, and that’s ok. No one is going to ask my kids when they are in elementary school or high school how they were fed or know the difference.
  2. What they see, doesn’t always hurt them. When you’re cowering on the toilet in pain and they’re watching with eyes that speak of concern. When you’re sitting on your couch about to do your injection. When you’re struggling to stand up straight because your abdominal pain is too much. Don’t shield them from your pain. That pain is part of your family story and it’s important you are honest and upfront. It’s those moments that shape their little hearts and their everchanging minds.
  3. Kids roll with the punches. Have to cancel plans or have a low-key day inside watching a movie instead of going for a walk or to the park? —that’s ok. Your children will feel loved and taken care of just the same. Kids are flexible. They don’t need to stick to a rigid schedule to be happy and fulfilled. At the end of the day, it’s your love and support that matters most.
  4. Innate empathy from a young age. With my oldest being four, I can’t tell you enough how many times I’ve been blown away by his empathetic heart. Before he was even two years old, he would kiss my thigh after my injection and walk up to me in the bathroom, give me a hug, and pat my arm or stomach to comfort me. Now, he asks me if I’m hurting or in pain. He knows mommy isn’t always healthy, but that she’s always strong and gets through it. That empathy goes far beyond me—I see it in the way he is with others and it makes my heart feel like it’s going to burst with pride. I credit that aspect of his personality to what he’s witnessed these first few years of life, and for that I’m grateful. I can guarantee you’ll see the same with your children.
  5. Greatest source of motivation. Even though I’ve been in remission since August 2015, my kids still serve as my greatest motivation on the difficult days with the disease. Whether it’s pain, prepping for a scope, or going through a procedure, I keep my eyes on the prize—them. Just thinking of them gets me through everything. They give me so much to fight for, day in and day out. It’s not just about me—it’s about all of us.
  6. The importance of communication. When you become a parent, communication becomes even more paramount in your relationship. If you don’t share when you’re struggling or symptomatic, your partner can’t offer the support you need. Even if you’re not in a full-blown flare, it’s beneficial for everyone involved (you, your partner, and your kid(s)) that you share when your IBD is causing you issues. I always text my husband when he’s at work or simply say, “I’m having a bad Crohn’s day” or if I’m in the bathroom for a long time after dinner while he’s trying to get the kids to bed …and that’s all it takes to get the message across.
  7. Asking for help doesn’t make you weak. You’ve probably heard the saying “it takes a village to raise a child” …and it really does. You are not failing or less than because you ask or help, need a break, or time for yourself. You will be a better mom if you take time for you. You’ll be better able to keep your disease in check if you have time to relax and de-stress. I’m not always the best when it comes to accepting or asking for help, but as I gear up for three babies four and under, I know I’m not going to be able to do it all on my own and that I’m going to need more out of my village.
  8. Your health can’t go on the backburner. When you’re a mom, your needs often go to the bottom of the totem pole. When you are an IBD mom, they can’t. While I used to try and “brave out” my symptoms until the last possible moment, as a mom, I’ve completely changed. After nearly 16 years living with Crohn’s, I know when my body is speaking to me and now, I listen and address what’s going on immediately. I credit being proactive and sharing with my GI when it feels like my remission may be in question for the reason why I’ve been able to stay in remission all this time. I’ve gone on bursts of steroids, had my trough levels checked for my biologic, and done fecal calprotectin tests through the years when needed. The last thing you want as a parent is to be hospitalized because of your IBD. To me—it’s inevitable. It’s not a matter of if it will happen, but when. But I do everything in my power to keep myself home and out of the hospital and will continue to do so until that’s no longer possible.
  9. Every “tummy ache” and loose stool from your child is not IBD. When my kids say they have a tummy ache or I seem to think they’re going to the bathroom more often one day than not, I’m immediately worried and concerned. Could it be IBD? Why are they feeling this way? Is it my fault? What do I need to watch out for? All the questions flood my mind and sometimes my emotions get the best of me. Then, my husband normally talks me down and says it’s probably nothing and I need to stop jumping to conclusions. He’s right. Chances are potty training could be causing tummy aches. Or maybe like the rest of the population, they are going more because of something they ate. The chance of passing along IBD to your child (when one parent has it) is only 2-9% (according to the Crohn’s and Colitis Foundation). Remember that.
  10. You are their hero. Of course, there are times I wish I wasn’t an IBD mom…and “just” a mom. At the same time, I credit my disease for much of my outlook on life and how it helps me cope with setbacks, but also celebrate what to many others may be the mundane. My kids don’t see me than less than. When they sit through doctor appointments in the stroller and blood draws, or watch me make faces drinking colonoscopy prep, or count to 10 while doing my shot before they go to bed, they simply see their mama. This is their normal—they don’t know anything different. When I talk to teenagers or young adults who grew up with a parent who has IBD, I always hear the same thing— ‘they are my hero’.

Along with being a hero to your little one(s)…you are also…

Someone who takes unpleasant moments in stride.

Someone who wears the title of “mama” with great pride.

Someone who will never stop fighting for the feel-good days.

Someone who doesn’t allow your illness to rob you or your child of joy.

Someone who goes after their dreams—like that of being a mom—even though your back story may be a bit more complicated.

Someone who is just as worthy as anyone to be a parent.

We’re four years in, Reid. Like everything in life, each moment—beautiful and challenging—is fleeting. Thank you for being patient with me, for understanding me, and for being a daily reminder that I’m so much more than my Crohn’s disease. Being your mom is my greatest title and has been the best chapter of my life story and patient journey thus far.