In order to get well enough to take on the role of motherhood in the way that I wanted, I would need to take Cimzia (throughout my first pregnancy) and then Humira (started after a rough flare and shortly before my second pregnancy). I was nervous at first, but, armed with evidence-based research, I was able to make my own informed decision to exclusively breastfeed both of my children while effectively treating my Crohn's disease.
I'm not one to engage in a mommy-battle of what is best for everyone. When pregnant, I merely desired to be given the option to do what I felt would be best for my future child. For me, breastfeeding was going to be that thing. Luckily, I'd say that the overall experience was successful and, in the end, really enjoyable. Along the way, though, I learned a few things that I hope to pass along.
1. Check Out the Research and Educate Others
My clinician and I spent a lot of time talking about my disease before I became pregnant. I spent even more time personally reflecting on my body, the disease, and my goals for my future little ones. Ultimately, we both agreed that untreated disease during pregnancy and breastfeeding would be far more harmful than treating the disease effectively might be.
Unfortunately, though, my GI wasn't the only one who would become a part of this decision. Once I got pregnant, my OBGYN's office was suddenly weighing in on my GI meds. In the hospital, once my child was born, the lactation nurse even suggested very strongly that I should NOT breastfeed. Extended family and people online were concerned, too.
WHY WERE THEY WORRIED!? I'm thinking that these fears were because this is a relatively new thing. I was probably the first woman that many of these people encountered who would be pregnant, breastfeeding, and parenting while on a biologic medication. Luckily for me, I had armed myself with the facts and would happily and calmly explain the data to everyone I encountered. At first, I wasn't prepared for this, but I got better at my "elevator speech" with time. Understanding the facts of your treatment course, and being able to explain them to others is helpful. Also, ask your GI to cheer you on in communicating this treatment goal to others on your team (it was ultimately GI who finally convince the lactation nurse to read the actual research and let me do my thing).
In general, the PIANO (Pregnancy in Inflammatory Bowel Disease And Neonatal Outcomes) study is the key. "The PIANO study has not found any increase in congenital anomalies, abnormal newborn growth and development, or other complications, among women receiving biologics[62]." This article sums up Dr. Mahadevan's work with the PIANO study quite nicely (it's written for Rheumatology - a field which also uses this type of medication, but which references the work in the Inflammatory Bowel Disease (IBD) field)
And, of course, I always encourage people to check out the Crohn's and Colitis Foundation's page for information and as a place to ask questions. Their pregnancy fact page can be found here. Unfortunately, it doesn't list anything about breastfeeding, but hopefully that will change soon!
2. Treat Your Disease
I know that it sounds terribly simple, but a great way to ensure that you're able to take on the task of breastfeeding and all that it entails is to make sure that your body is as strong as it can be. This means to make sure that you're treating your disease as well as you can. This will look quite different for each person, but you and your medical team probably have a good idea of what your path to wellness may be (if you don't know, that's ok! But you should spend some time thinking and talking with your doc about it). For me, effective treatment meant biologics and addressing anemia. It also meant revamping my diet to manage lingering symptoms of IBS, as well.
Because I took this task to treat my illness seriously BEFORE my first pregnancy, it was also a huge surprise when, around 11 months after my son was born, I developed an incredibly painful obstruction. I found my weight dropping and my milk supply dipping sharply. My body was telling me something. Symptoms came on so rapidly that I knew that prednisone would be the only thing to keep me out of the hospital while I reviewed my medications and made the best decisions for my health and my ability to parent my son. This meant that I had to make some hard decisions about breastfeeding - ultimately stopping completely - as I was losing all supply and having trouble even getting off the couch. It was such a hard experience, and yet, I didn't feel anything but pride for everything that I had been able to accomplish up to that point, and I felt fortunate to access medical supports to get back into a good space a few months later.
So, always keep a close eye on your health and let your body be your guide. Your health and your ability to breastfeed are yours alone, be proud of whatever decisions you make that will keep you well and help you parent your child in the best ways possible.
3. Eat and Drink for Two
Consuming enough calories and taking in enough fluid is incredibly important for anyone who breastfeeds. The reality is, your body is creating everything that your baby needs to develop and grow. That's a HUGE responsibility for anyone to take on, and requires a large amount of fuel to sustain. In addition to that, many individuals with IBD may experience trouble with dehydration, B12, and/or iron-deficiency anemia, among other nutritional needs. If that's the case for you, take the time to write out a meal plan (maybe even before you give birth to help you make sure that you are planning for the amount of food and fluid that you'll need). Even if you don't have too many dietary restrictions, simply writing out a snack and fluid sheet might be helpful, to really be sure that you're getting enough of a varied, healthy diet.
In the early days of breastfeeding, when I felt tired or worn out, I took these feelings as my body signaling my need to take in more fluid and/or calories. I would drink a full glass of water, eat a snack, and sit for a few minutes, and often this would help me get through until my next nap. Here is more information on a healthy diet that I followed when I was making my meal plans. Whatever I could eat that was safe for me while in remission; that would help pack a high-protein, high-calorie punch with some variability mixed in whenever possible, was my ultimate goal. If you can, make sure to eat before you get too hungry, too!
My favorite snacks: Avocado toast, crackers with peanut butter, scrambled eggs, fruit with peanut butter, and smoothies!
*Make sure to drink enough fluid every time you need to breastfeed or snack. But also, let your body be your guide. It may sound strange, but keep an eye on your pee and make sure that it's as close to slightly clear as possible. How much your child takes in will change as your child grows, so the amount of fluid that you'll need may increase dramatically over the months (especially in the hot summer!).
4. Rest and RELAX
I took on three things when it came to relaxing that I found to be immediately helpful. 1. Each night, I went to bed as early as I could, often around 7:00pm. I left my son with my husband who was happy to sit and snuggle while watching old James Bond movies, and I was sure to get at least 3 solid hours before my first nursing wake-up call around 10:00pm. 2. I also subscribed to a weekly magazine and made myself sit and read it before the week was over. This was something that I continued until my son stopped breastfeeding during the night. 3. After I was cleared to do so, I started a gentle yoga practice. This practices has continued over the years and is STILL my favorite go-to stress-reducing activity. It was important for me to get out of the house, take a deep breathe, and get in tune with the body that I was asking to take on so much for my child and me.
If you can nap, you should nap. And then nap again. I made myself lay down whenever I could. Was I always able to do this? NOPE. Sometimes I would let the dishes get to me. I really had to mentally talk myself through the balance of resting as much as I needed with my type-A desire to keep the household in line. It was helpful that I communicated my need to rest to everyone in my family, so that they would check-in to make sure that I was taking care of myself as much as I could.
Sometimes, sleeping was hard for me. Insomnia can be an issue for many new moms. If you are dealing with this, you should absolutely talk with your doc, as sleep really is just SO important. I found that a combination of meditation, meditative music, and enough food and fluid during the day would help. Sometimes, I would be kept up because I was thinking about the baby or the fact that I'd probably need to get up in a little bit to nurse anyway... From time to time, that may be normal, but if it's happening a lot, talk to your doctor. A mental pep-talk usually got me back to sleep... that and late-night BuzzFeed articles to calm my brain!
5. Prevention when Possible
This may be a tactic that, like me, you already took on when you first started using biologics, but preventing illnesses/infections from coming your way will pay off in the long run. Because I had my first son in the middle of a difficult flu year, I asked that ALL family members who wanted to visit us please get the flu shot. There would be no exceptions. I also limited visitors at first, but loved to FaceTime, so that I could at least share the experience with others. I also made sure to get plenty of fresh air and to keep an eye on my own health and stress levels (see steps 2, 3, and 4!).
For everyone, exactly WHAT you're preventing (if anything) may be unique. I had a lot of issues with clogged milk ducts, so I would immediately focus on relieving a clogged duct and resting, drinking, and staying chill when I was dealing with one. When I started taking on too much work too soon with my second child was born, and I wasn't pumping enough and focusing on myself, I quickly developed a high fever and mastitis when I didn't follow my own set of prevention techniques. I've talked with many others who haven't experienced this issue, so the main point - just know your own triggers and do what you can to support your unique health needs.
BONUS: Be Proud of YOU! Whatever your outcome - know that you're a rockstar parent with IBD, and that is a fact that will make your child proud someday. So just do YOU and be proud!
Don't forget: for the first 6 months after birth, babies exposed to biologics shouldn't be given live vaccines - make sure that you are sharing this information with your child's pediatrician.