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.

IBD Motherhood Unplugged: Breastfeeding and the COVID-19 vaccine

After a lot of thought and consideration, I decided to hold off on getting my COVID-19 vaccines until after I delivered my son. Before we dig deeper into this topic, I want to clarify that this was solely my choice, everyone needs to do what they are most comfortable with. Since the pandemic began, unprecedented pressure and stress has been placed on pregnant and lactating women to make one decision or another. For me, as a stay-at-home mom, who continued to keep a low profile while pregnant, I felt more at ease waiting to get my vaccines until after my son was out of my body. My care team made up of a maternal fetal medicine doctor, OB, and gastroenterologist all supported my choice to wait.

My main reasoning was limiting the variables of exposure. All my kids were exposed to Humira while in utero. While there are long term studies that show the safety and efficacy of biologics in pregnancy, you never know. If down the road my son had any health complications or issues, I didn’t want to have to grapple with whether my biologic or a vaccine contributed or were to blame. As an IBD mom, we deal with enough guilt as it is.

So, I chose to wait. Anxiously. Patiently. Luckily, I delivered my third child, Connor Christopher, July 14th, and did not encounter any COVID-19 scares while pregnant. Once I was home from the hospital following my C-section, I talked with my gastroenterologist and OB about getting my first COVID vaccine and scheduled an appointment at Walgreens ASAP.

Getting the first jab

Wednesday, July 21, I finally got my first dose! A little late to the party, but I’m currently exclusively breastfeeding (and pumping), and I’m hopeful that once I’m fully vaccinated (two weeks after my second dose in August), my son will receive antibodies from the vaccine that way. It felt a bit surreal to finally be at a point where I felt comfortable with my personal choice to get the vaccine.

According to the CDC, since January 2020, there have been 34 million cases and 607,000 deaths. As of July 21st, 161.9 million people are fully vaccinated—that’s 48.8% of the total population, or 57.1% of the population older than age 12. Virus variants threaten new outbreaks among the unvaccinated.

Much like making decisions to manage IBD, it’s imperative our community looks at the benefits vs. the risks of getting the vaccine.

Words from leading medical experts in the IBD community

This past week Dr. David Rubin, MD, Professor of Medicine, University of Chicago presented, “Updates on COVID-19 for Patients with Inflammatory Bowel Disease”.

“Everyone needs to be vaccinated, this includes pregnant women and new moms. The Delta Variant is VERY contagious. The data in IBD is reassuring when it comes to immune responsiveness compared to the general population, especially with the two dose mRNA vaccines. Antibodies against many things are transmitted in colostrum, and that may be the anti-SARS-CoV-2 spike antibodies too, which may provide protection to the baby. It’s definitely NOT dangerous to breastfeed after vaccination.”

Speaking of the Delta Variant, according to Dr. Rubin’s presentation as well as guidance from the CDC, “Delta was 1% of COVID-19 cases during the week of April 10th. By the week of July 3rd, Delta is estimated to account for 57% of new COVID-19 cases. Within a matter of 12 weeks of being introduced to the US population, it became the dominant variant here.

Dr. Uma Mahadevan, MD, University of California San Francisco agrees, saying given the ongoing crisis with COVID-19, all eligible people should get vaccinated.

“Breastfeeding mothers can get vaccinated per CDC guidelines and there is data that the antibody from the vaccine crosses to the infant via breastmilk, possibly providing them with protection as well! For many infants of moms with IBD, they have detectable levels of biologic agents in their blood for the first 6 months of life. Having antibody against SARS-Co-V-2 may provide them some protection against getting ill if exposed to the virus.”

Dr. Meenakshi Bewtra, MD, MPH, PhD, Penn Medicine, has IBD herself and has been a vocal advocate for our patient community since the start of the pandemic. She implores everyone to get the vaccine, immediately.

“Don’t wait. In fact, I, every doctor I know, American College of Gastroenterology, and Maternal Fetal Medicine recommend getting the COVID-19 vaccine while you are pregnant. Why? Because we’ve seen what happens to pregnant women who get COVID. There are women who got the vaccine in trials; there were women who got vaccinated while pregnant (>10,000 at this point)—we have a lot of data. The evidence is crystal clear. The same holds for getting it while breastfeeding. COVID is real, it’s out there; you can get sick and die; you can transit it to your infant or others in your house. There is absolutely no reason why anyone should not be getting vaccinated unless you know you have an allergy to something in the vaccines themselves. Your protective antibodies can pass to the infant.”

COVID-19 in the IBD Community and Vaccine Response

Thanks to the SECURE-IBD database, we have more guidance about how those of us with Crohn’s and ulcerative colitis have responded and continue to respond to not only COVID, but the vaccine. People with IBD do not have an increased risk of getting it. Aminosalicylates, biologics, and immunomodulators show no increased risk of severe COVID- 19. Steroids are associated with worse outcomes. And biologic therapy is associated with decreased risk of severe COVID-19 outcomes.

One of the main concerns many of us in the chronic illness community on immunosuppressive drugs have wondered about is the efficacy of the vaccines in our body. Good news—a recent study of 246 patients with IBD who received both doses of the vaccine showed similar adverse events as in the general population. Sore arm, headache, and fatigue are the most common adverse effects of the vaccine. All I had after my first Pfizer vaccine was a sore arm. More importantly, the study showed no increase in IBD flares.

The Prevent-COVID study shows even more promising data with more than 1,700 participants with IBD. Click here to see results of the study—everything from rates of vaccine side effects to lab titers three months out.

As of now, there’s no recommendation or approval regarding a booster vaccine. Pfizer announced that their clinical trial data showed that a third shot may increase antibody levels, but nothing has been published yet. Without more research, it’s unclear if an increase in antibody levels will provide greater protection from the virus than two doses.

Get Involved in COVID-19 Vaccine studies

University of Chicago Inflammatory Bowel Disease Center COVID-19 Vaccine in IBD Study

  • This study is analyzing the durability, safety, and efficacy of COVID-19 vaccines in patients with IBD, If you are interested in participating in the study (whether you have already been vaccinated or not) please email: covidvaccine.ibd@lists.uchicago.edu.

Prevent COVID Research Study

  • If you are 12 to 17 and have received your first COVID-19 vaccine in the last 90 days, you may be able to take part in PREVENT COVID, a research study to learn about the vaccine experiences of people with IBD. Click here to learn more.

CORALE-Vaccine IBD

  • The purpose of this research being conducted at Cedars-Sinai is to understand the effects of vaccination against COVID-19 in people with IBD. To achieve this goal, a national and local group of adults with IBD who are eligible to receive any available vaccine against COVID-19 are being recruited. Within this group we will evaluate the antibody levels of the body’s response to the vaccine. Questions about the study? Contact the CORALE-V IBD Research Team at Cedars-Sinai at ibdresearch@cshs.org or call 310-423-5643.

Washington University in St. Louis: COVID-19 Vaccine Response in Patients with Autoimmune Disease

  • School of Medicine researchers are leading a clinical trial to evaluate the safety and effectiveness of COVID-19 vaccines in people taking immunosuppressive drugs. Such drugs are prescribed to treat autoimmune diseases, including arthritis, Crohn’s disease, and psoriasis. Researchers will enroll up to 500 adults ages 18 and older in the St. Louis region. They are recruiting health-care workers at the School of Medicine and patients seen in Washington University outpatient clinics. Eligible patients who have preregistered for the COVID-19 vaccine will be contacted to assess their interest in being recruited into the study. For information about participating in the trial, email covaripad@wustl.edu, or contact either Alia El-Qunni at 314-249-1151 or Lily McMorrow at 314-280-3894.

V-Safe

  • Use your smartphone to tell the CDC about any side effects after getting the COVID-19 vaccine. The tool uses text messaging and web surveys to provide personalized health check-ins after you receive a COVID-19 vaccine. Depending on your responses, someone from the CDC may call to check on you. Participation is voluntary and you can opt out at any time. Sign up at: www.vsafe.cdc.gov.

Additional information for your consideration:

Coronavirus disease 2019 vaccine response in pregnant and lactating women: A cohort study

CDC: COVID-19 Vaccine While Pregnant or Breastfeeding

Parents Magazine: The COVID Vaccine and Breastfeeding: What Nursing Moms Need to Know

University of California San Francisco: No Sign of COVID-19 Vaccine in Breastmilk

Study Finds COVID-19 Vaccines Safe for IBD Patients

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: The new addition to my hospital bag for delivery

Let’s face it, when you live with IBD, packing for a hospital stay isn’t anything new. We know what we need and what we won’t. We know the necessities and even with a C-section recovery, it’s nice to have a positive and happy reason to be going to the hospital. But this time around, my hospital bag for delivering my son this week has an addition. Since I’m participating in the Pregnancy in Inflammatory Bowel Disease and Neonatal Outcomes (PIANO) study, my son and I will be getting our blood drawn the day he’s born and cord blood will also be taken. 

The blood sample kit includes an ice pack and vials that are labeled “Mom”, “Cord”, and “Baby”. This will measure the level of biologic drug in our bodies…and the coolest part is, I’ll get to know the results, while also contributing to research for current and future IBD moms on biologics. I can’t wait to find out how much Humira is found in our blood samples. The most ironic part of all? My scheduled C-section just happened to land on the same day as my loading dose anniversary of Humira… 13 years ago! Little did I know when I was injecting myself for the first time how my life would evolve to what it is today.

Background on the PIANO study

PIANO is an observational, multicenter study launched in January 2007 with the main focus to look at whether there is an increased risk for worsened maternal and fetal outcomes when a woman takes a biologic or thiopurine (a type of immunomodulator) therapy during pregnancy. Prior to this, lack of safety data has led many women to discontinue their therapy during pregnancy, which can lead to health repercussions to both mother and child.

On delivery day, it will be a team effort. My OBGYN and the nurses will ensure everything is taken care of and then one of my family members will make a stop at FedEx (within 3 days) to ensure our blood samples make their way safely from Missouri to California.

What else is packed in my bag?

This c-section will be my fourth abdominal surgery in less than 6 years, all on the same incision. Knowing what to pack so I can heal and be comfortable is almost second nature at this point.

  • Comfy nightgowns with buttons so I can easily breastfeed and keep my incision waistband-free
  • Two robes
  • Nursing bras
  • Cozy socks
  • Frida Mom Boy Short Disposable Postpartum underwear (not a fan of those mesh panties from the hospital!), I’ve also heard Depends are great!
  • Slip on shoes/flip flops (for the shower and walking the halls)
  • 5 masks (planning to be admitted 4 nights, 5 days) and hand sanitizer
  • Nipple cream (I prefer the Motherlove brand)
  • High-waisted joggers and a nursing top
  • Summer dress for the drive home
  • Phone charger
  • Non-perishable snacks
  • Toiletries
  • Outfits and swaddles for baby boy
  • Newborn pacifiers

The results from the blood draws are expected about a month after delivery. I’ll be sure to share an update on my Instagram page (@natalieannhayden). Interested in enrolling in the PIANO study? Please call 415-885-3734 or email PIANO@ucsf.edu.

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