What It’s Like to Breastfeed When You Have an IBD

Breastfeeding has been a unique experience for me. I’m a mom of three with Crohn’s disease, and I fed each of my children differently their first year of life. My youngest recently turned 1. I exclusively breastfed him during his first year, but that wasn’t the case for the other kids.

Being a mom with inflammatory bowel disease (IBD) adds layers of complexities that are often not talked about when it comes to feeding your child, what’s best for you physically and mentally, and what works for your family. It’s not a black-and-white issue, and the gray area can be overwhelming as you navigate pregnancy and parenthood with IBD.

Uncertainty About the Best Way to Feed My Son

When I was pregnant with my first child six years ago, I was adamant aboug not breastfeeding. I’ve been on a biologic injection to manage my Crohn’s disease since 2008, and at the time of my pregnancy, I didn’t feel there were enough long-term studies showing the safety and efficacy of breastfeeding while on this medication. I dealt with enough fear and guilt staying on my medication while he was in utero. At the time, I wanted to cut all ties between my body and his in case I had a postpartum flare and wouldn’t be able to provide for him while hospitalized. I ended up nursing Reid during his first three days of life so he could get colostrum, and then we introduced formula while we were still in the hospital.

Even though I knew formula was the game plan, it was still emotionally taxing on me. I cried the first time we gave him a bottle and felt like I was failing him. Societal pressure was screaming at me, saying things like ‘you’re taking the easy way out’ or ‘you’re not giving him the best nourishment he could have.’

At the same time though, I was comforted knowing that he wouldn’t need to depend on my body for food if my IBD were to flare. But family members, friends, and even strangers would casually ask me if I was breastfeeding him, and the comment or look or stare after I responded added salt to the wound because it was a constant reminder of the expectations of society that I wasn’t meeting.

As a woman with IBD, I have struggled with feeling "less than" because of the limitations of my disease. From trying to get pregnant while living with a chronic illness, to carrying a child in a body that’s been riddled with disease for years, to delivering and not knowing how the hormonal shift will impact disease activity — it’s a lot. Not to mention the daily fatigue of motherhood, multiple bathroom trips, and constant pain.

A Different Option for My Second Child

When I became pregnant with my second child in 2018, I was well-versed on the topic of IBD and pregnancy, and participated in several patient advocacy projects that informed me about the benefits of breastfeeding while on my medication.

For example, a study entitled, “Breastfeeding and Risk of Inflammatory Bowel Disease: A Systemic Review With Meta-Analysis,” published in Alimentary Pharmacology & Therapeutics, showed breastfeeding newborns and infants lessens the likelihood that they will develop Crohn’s disease and ulcerative colitis later in life. In 2017, Massachusetts General Hospital in Boston looked at 35 previous studies that involved more than 15,000 IBD women. Researchers found that being breastfed reduced the risk of a child developing IBD by 26 percent (Crohn’s disease by 29 percent and ulcerative colitis by 22 percent). If a woman breastfed for at least 12 months there was the strongest decrease in risk.

While I was pregnant with my daughter, Sophia, I knew I was going to try to breastfeed her. I was nervous and excited at the same time. I saw how my firstborn thrived and was a picture of health after being on formula for his first year, so that helped comfort me. But I wanted to give breastfeeding a shot and was confident that I could do so safely.

Breastfeeding was a labor of love, blood, sweat, and tears from the start. I did not enjoy it. The first night home she cluster-fed the entire night, meaning she would latch on to my breast for short feedings multiple times throughout the day. I was bleeding. I was texting all my fellow mom friends in the early morning hours for advice and settled on pumping for most of my daughter’s meals. I would still nurse her, but only once or twice a day.

The first few months were grueling but I didn’t want to give up, and at the same time it felt like a lot of pressure to keep up with her feeds. I almost felt like I had something to prove to myself and to others. It felt like a badge of honor to say, “Oh yeah, I’m breastfeeding my daughter.” My husband would feed her a breastmilk bottle in the middle of the night while I pumped and didn’t understand why I wouldn’t just nurse her.

After three months, I started supplementing formula and we got into a much better groove. She would easily go from the breast to a bottle of breastmilk, or a bottle of formula, and not bat an eye. I finally felt at ease.

Once we hit the six-month mark, I hoped to make it the rest of the year, but the moment my menstrual cycle returned my milk supply disappeared. In a way, it was nice because I didn’t have to make the choice to stop, and I didn’t have to deal with weaning. I wasn’t sure I would ever want to breastfeed again. As women, it can be easy to fall victim to the constant, looming societal pressure, but it’s important we drown out that noise and not allow it to dictate the way we live our lives — whether it’s the way we feed our children or how we parent.

How I Became an Exclusively Breastfeeding IBD Mom

I delivered my third baby, Connor, in July 2021. We were still in the thick of the COVID-19 pandemic. I felt a bit more confident about how to breastfeed since I’d done it before. Not only did I want to pass along the antibodies of the COVID-19 vaccines, I also wanted to do all I could to ensure his microbiome received nourishment that would hopefully lower his chances of ever getting IBD. I started nursing him in the recovery room after my C-section on July 14, 2021, and I’m still breastfeeding him exclusively today. He’s had about 15 ounces of formula his entire life, not by my doing — he’s just a milk snob!

From getting three COVID-19 vaccines, to getting COVID-19 myself, as well as mastitis, and going through colonoscopy prep — we’ve been through a lot. While it hasn’t always been easy, it’s been a beautiful, nearly effortless experience this time around. He’s a go-with-the-flow type of baby, and as a stay-at-home mom, it helps that I can feed him on demand. The nights and early morning hours have been taxing since I’m the only one who can feed him, but even that wasn’t too overwhelming because I’ve known all along, he’s my last.

The Need for Better Lactation Support for Moms With IBD

Much like there are registered dietitians with a focus on IBD, I wish there could be lactation consultants with a background in chronic health issues. In my three experiences, the lactation consultants in the hospital were not well-versed in Crohn’s disease and even made comments that added pressure to an already stressful situation. One told me “You better not give anything but breastmilk to this baby, you need to line her gut with breastmilk, so she doesn’t get IBD.” Hearing that did not help me in any way.

It’s important that mothers with IBD have support each step of the way through maternal fetal medicine and gastroenterology to learn about the benefits of breastfeeding and how to manage when flaring, hospitalized, or trying to make it through grueling preps for scopes that entail not eating or drinking while trying to nourish a baby.

As a mom with IBD, there’s never-ending fear and worry about a flare, the next hospitalization, navigating procedures and preps and pain medications, and possibly passing along a disease to my children. You are not less than for not being able to breastfeed; if you are able to, great. If not, go easy on yourself and do what is right for you.

As someone who has fed her babies differently, and seen them all grow and thrive without issue, I’m truly of the belief that “fed is best” and that you need to do what works for you, your family, and your baby. At the end of the day, they’ll all end up eating McDonald’s french fries off the floor of the van someday.

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