What I wish I knew about Crohn’s before getting pregnant and having my son

Living life with a chronic illness has its fair share of challenges—coupled with pregnancy, life gets even more complicated and fragile. Every decision you make to handle your disease process not only impacts your own well-being, but also your child’s.

During my pregnancy I noticed how common it was for people to ask questions regarding Crohn’s disease and having children, whether it was online or in person. Questions such as—can you get pregnant? Should you stay on your medicine? Should you deliver vaginally or have a c-section? Now that I’m a mom and my first pregnancy is behind me—I thought it would be helpful to reflect on some of the difficult decisions and experiences that come along with bringing a life into this world.

Here are my responses to the most commonly asked questions.

Can you and should you try to get pregnant?

The answer to this is YES! Just like with most things in life—timing is everything. Women with ulcerative colitis or Crohn’s disease that’s in remission can become pregnant just as easily as other women of the same age. However, if your IBD is active, you may have more difficulty getting pregnant. The key is getting pregnant when your symptoms are at bay and your disease is calm. That way you have a better likelihood of carrying over that remission throughout pregnancy. Luckily, my husband and I started trying for a family 10 months after my bowel resection surgery. I was feeling great and my disease was nonexistent during my entire pregnancy.

To stay on medication…or not to stay on medication.

This can be an emotional decision (especially if you’re feeling well) and one that you must discuss with your doctor(s). After my surgery in August 2015, I felt invincible. I had been taken off all medications for the first time in ten years to allow my body to heal. This newfound freedom made me believe that I could always cruise through life without needing to pop pills each evening or give myself injections. That November, during an appointment with my GI, I was told that would never be the case and that I’d be playing Russian roulette with my health. I’ll always remember being told that I had a “severe and aggressive form of Crohn’s” and that I would need to start up my Humira injections and add additional medications immediately, or else there was a big risk of my disease flares returning within a few years. I remember the tears flowing and how it felt like a punch to the stomach. As difficult as it was to put myself back on medication knowing that I wanted to start a family in seven months, following the doctor’s orders ended up being the best thing for me.

Having clear communication with your doctor is imperative. My GI put me on a prescription prenatal vitamin and folic acid to prepare me for pregnancy. I started back on Humira in November 2015 and haven’t stopped giving myself the injections since. Was it scary at times to inject myself with a medication when my baby bump was prominent and I could feel my son kicking? Yes. It was very emotional—but, it gave me peace of mind to know that this medication was preventing a major flare that could complicate Reid’s birth and cause pre-term labor. Every doctor has a different opinion on this—some say to get off biologics the final trimester, others say to stay on throughout. My OB, high risk OB and GI all agreed it was important for me to stay on Humira and Lialda from start to finish so that everything with my Crohn’s was managed properly.

Will I pass Crohn’s disease on to my children?

According to many health studies, there is a 4-10% chance of passing IBD on to your child if one parent is an IBD sufferer. This increases significantly if both parents suffer with IBD (up to 30%), plus if other members of the family are also sufferers. I personally, would not let your diagnosis hold you back from having a family. While you hope and pray your offspring don’t end up with Crohn’s or ulcerative colitis, what better person to advocate for them…than a parent who lives it–and gets it.

Should you deliver vaginally or get a c-section?

Once you find out you’re pregnant you’ll want to make sure you get a team of doctors in place—an OB, a high risk OB and your GI. Each case and situation is different and both types of deliveries are possible. I know women with IBD who have delivered both ways. The key indicator is where your disease is located. If it’s in the perianal region or if you’re apt to fistulas, you’re a candidate for a scheduled c-section.

The next is your size—my first appointment with the high risk doctor I was told it would be difficult for me to deliver a baby larger than seven pounds due to the size of my pelvis. After hearing that at 8 weeks pregnant, I felt pretty confident I would end up with a c-section.

Just like any pregnant woman—if the baby is breech, if you have placenta previa, etc…the decision is a clear one.

It ended up being a game time decision until my 39th week. The doctors kept a close eye on me and once Reid showed no sign of coming on his own, we decided to schedule a c-section. The entire experience was extremely positive and I’m so grateful everything went smoothly for us both. Lucky for me—the incision from the c-section was able to be the same as my incision from my resection, I didn’t have any adhesions and the scar tissue from my previous abdominal surgery was nearly non-existent.

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Becoming a mother is emotional and overwhelming—you’ll receive advice from anyone you’re willing to listen to. Take it all in stride and remind yourself that no matter how your baby gets here—whether you have a natural birth without medicine or a c-section, if you breastfeed or if you don’t…it’s your life, your journey and your family. Do what feels right in your heart and what you are most comfortable with. After nearly 12 years of battling Crohn’s, it’s truly remarkable to go through a pregnancy, bring a life into this world and see all that your body is capable of… despite the hardships its endured along the way. Have faith in your medical team and once that baby is in your arms and you lock eyes that first unbelievable moment—it will all be worth it.

4 thoughts on “What I wish I knew about Crohn’s before getting pregnant and having my son

  1. Nikki says:

    Hi there, I just stumbled upon your post and wondered if you breast fed on Humira? I am in remission and 18 weeks pregnant and my high risk OB just told me she doesn’t support breast feeding while taking the drug (they just upped me to weekly since my absorption levels weren’t very high at my last blood work). My GI has a specialty in IBD and pregnancy research and says it’s fine. What was your experience like?

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    • Natalie hayden says:

      Hi Nikki! Thanks for checking out my blog. First of all, congrats on being in remission and on your pregnancy! So exciting. That’s shocking to me that your doctor advised not to breastfeed while on Humira–I’ve heard the complete opposite from every doctor I’ve ever asked about it. I personally chose not to breastfeed, because in my eyes…there are not enough long term studies (if any) to show the long term effects on a baby. All my doctors (high risk, regular OB and GI) strongly advised for me to stay on Humira throughout the pregnancy to keep me healthy and strong–and flare-free. I had a flawless pregnancy, not one issue with my Crohn’s. My son was born perfectly healthy and just now has his first cold, he’s over 7 months. I just personally didn’t feel safe knowing the side effects you and I have to worry about…how does that not carry over for a baby. You need to follow your gut and do what you think is best. Many, many people choose to breastfeed on Humira. I also didn’t like the thought of having the stress of trying to breastfeed if I was flaring and needed to be hospitalized. My symptoms started up a week after I delivered (haven’t needed to be hospitalized since my son was born)…but it was definitely different than it was while pregnant (for the worse). I breastfed my son the first three days so he could get the colostrum and then we started formula. I once did Humira weekly for four months (back in 2015)…it made no difference… I had a bowel obstruction and then a bowel resection (18 inches of my intestine removed)…and was then put on it again twice a month. Just remember–FED is best.

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  2. Nikki says:

    Thank you! Very helpful. I have another 20 weeks to figure it out so plan to do my research in the meantime! I too am doubtful about the weekly dose. I had a minor flare at 7 weeks (no signs of inflammation on my blood work done just a week prior – typical haha) so they are definitely a little nervous given the amount of scar tissue I have from years of damage and want to take every precaution, I just hate the injections and all the medication! Hopeful I will be one of the lucky ones who doesn’t flare after delivery, but given the past year, I am doubtful. Did you have any strategies once discharged to try and avoid it (low residue diet, etc?). Also was surgery ever brought up as an option prior to the bowel obstruction? I feel like it’s always a last resort solution (that my doctor never brings up because i’m “healthy”) and never an active treatment choice. My ileum is so damaged I can’t see Humira being a long term fix.

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    • Natalie hayden says:

      Of course, Nikki! Feel free to reach out to my directly through the contact page if you have additional questions! I am more than happy to provide you with more advice/peace of mind as you gear up to be a mom. 🙂 I wouldn’t be worried about it hurting you to be on Humira weekly, I just don’t know that it will make much of a difference. It didn’t for me, of course everyone is different and I’m not a doctor and can only speak from personal experience. Weekly shots are just a lot to go through if the outcome isn’t going to be any different. I had pretty much complete remission the year before my pregnancy and throughout the entire pregnancy, so it was extremely discouraging that I started experiencing symptoms two days after getting home from my c-section. Surgery was brought up to me back in 2008 for an abscess I had, but IV meds cleared it up. Otherwise until 2015, surgery wasn’t ever really discussed–same as you–was a last resort. Honestly, surgery was the best thing I ever did in my 12+ years with the disease. It helped me SO much and has continued to make a huge difference in helping me feel good for the most part in my day-to-day life. Good luck with the second half of your pregnancy–trust in your strength and know that your body is capable of creating a perfect little life. Don’t doubt that for one second. I just did my Humira shot staring at my sleeping baby, it”s my new go-to way of getting in the zone and focusing on what’s important. Staying home and out of the hospital. That will soon be you, too! 🙂

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