If you're lucky enough to know Susie Lemmer, 31, you know she's a total badass—a Chicago woman who runs marathons, has the best attitude, and is an open book when it comes to her experiences with Crohn's disease, a form of inflammatory bowel disease (IBD).
But her health struggles didn’t end with Crohn’s. On top of managing IBD, Susie has also struggled with her fertility journey—in fact, the two may be related. While some women don’t experience fertility issues with IBD, many do—and a lot of it depends on the individual’s disease history, medication use, and more.
For example, fluctuating hormones can play a role in the severity of Crohn’s symptoms, and some IBD medications can alter the body’s ability to produce the right hormones at the right time—this was the case for Susie, who says she’s never had "normal" hormones during her 18-year diagnosis with Crohn's disease and other chronic illness. In fact, when she was 16 years old, she says, "A doctor told my mom that if I ever got pregnant, I would die."
Unfortunately, this is the story told to many women with hormone complications and IBD. But Susie wasn’t going to just give up on her dreams to have a family.
Preparing for Pregnancy With Crohn’s Disease
Susie and her husband, Alex, knew they wanted to have kids, but they also knew there was no way she could get pregnant without medical help. That’s partially why the couple, who lived in Virginia at the time, decided to move to Chicago at the beginning of their fertility journey; Illinois is one of 16 states where laws require insurers to offer coverage for infertility issues and treatments like in vitro fertilization (IVF).
Experts from the American Gastroenterological Association recommend that women with IBD who want to become pregnancy seek out the care of a specialist who can help coordinate care with her gastroenterologist throughout the fertility process—for example, they recommend women work with a maternal-fetal medicine specialist, who specializes in pregnancy care. Once in Chicago, Susie ended up connecting with a reproductive endocrinologist—a gynecologist that specializes in working with hormonal and fertility issues—who immediately began helping her prepare her body for pregnancy.
Because her hormone levels were so low, she had to go on a regular birth control pill to develop a hormonal baseline. "My engine [was] fine, but there's no starter,” Susie said. “What happened if we jumpstarted it? Would it run? Would it sputter out? Would it explode?"
Susie's Crohn's treatment included Remicade infusions and methotrexate, an immunosuppressive drug that’s unsafe to use during pregnancy due to the increased risk of birth defects and other issues, according to the Organization of Teratology Information Specialists. After she went off methotrexate—which she’d been taking since 2009—she had to wait three months for the drug to completely clear her body, and then go for a colonoscopy to see how her Crohn's was doing. Sometimes, going off of medications can trigger IBD flares that can endanger healthy pregnancies, according to the Crohn’s and Colitis Foundation.
Thankfully, her scope revealed that she was in remission, which meant it was time to start trying to conceive. Most women who are in remission from IBD when they get pregnant will stay in remission throughout their pregnancy, according to the CCF. But when Susie didn’t get a period or a positive pregnancy test in the first few months after going off her birth control, she knew she had to get her hormone levels checked.
Unfortunately, they were even lower than before.
Dealing With Infertility
The next step: Susie’s doctor decided to try her on a drug called Clomid (clomiphene citrate), which is an oral medication that is used to stimulate ovulation. But for Susie, it didn't work. The next course of action was to try IVF. But this came with some concerns.
Because of her Crohn’s, Susie is quite petite—and women who conceive with IVF run a higher risk of having a multiple pregnancy, according to the American Pregnancy Association (APA), and her doctors worried that would put too much stress on her body. But Susie and her husband charged forward, swallowing the bill for the first payment for the IVF medication.
After briefly going back on birth control to establish a menstrual cycle, Susie gave herself her first IVF shot on New Year’s Eve in 2017. "I gave myself all of the shots. My husband tried, but of course, didn't do it right," Susie laughed.
Life Changes With IVF
"The thing with IVF is that it's a huge lifestyle change,” Susie explains. “You get super familiar with your doctor's office because you go almost every morning to get your levels checked and get a vaginal ultrasound.”
Then it was time for her first egg retrieval. "They only got five eggs, and I was crestfallen," Susie says. "I had friends that had gotten 20 eggs, and all I could think was, I only got five?" Then, none of them took during her transfer.
That meant round two of IVF. This time, she got 10 eggs. They did a transfer five days later, and one egg matured enough to freeze. The others didn't take.
To help bolster her chances that the lone egg would be their chance at pregnancy, Susie decided to pursue progesterone and estrogen shots for three weeks. On May 7, 2017, she did the frozen transfer.
By the following Monday, she was pregnant.
Becoming a Mom
"You want to be excited, but you're terrified,” Susie says of the moment she found out she was pregnant—via an email. “It was an out-of-body experience, but I was also very much in that place. It's like when you're diagnosed with Crohn's—you think, is this going to change how I live my life and think about what's to come?"
It’s true that there is a slightly increased risk of miscarriage with IVF compared to pregnancies conceived naturally, per the APA, but Susie decided to celebrate her pregnancy and remain positive. Whenever she'd get nervous, her husband was there to remind her, "Until we have another reason to think otherwise, she's still there. Don't create a problem in your brain."
Her daughter Emmie was born on Jan. 23, 2018.
Key Advice for Women With Chronic Disease Trying to Conceive
Having struggled with IBD and fertility issues herself, Susie has built up a stockpile of wisdom for other women facing similar situations. Here are her top pieces of advice:
- Don’t stress about numbers. When you’re pursuing fertility treatments, all the test results, hormone, and egg numbers can become overwhelming. But Susie says to focus on the big picture. "Remember that it only takes one egg,” she says. “I was so focused on big numbers for egg retrieval, but all it takes is one egg.”
- Approach pregnancy like you approach IBD management. If you do get pregnant, Susie recommends you treat the experience like you treat your IBD—week by week and day by day. "Literally every week with pregnancy is different. One week you look like an elephant, the next week you can't eat any vegetables, and then the week after that all you eat is fries," she laughs.
- Stay in close contact with your doctors. "The experience is all about communication with your doctors and being real with yourself," she says. Focus on the positives and listen to your health care team. "Don't push yourself so hard that you wind up in a hole too deep to get out of."
- Lean on your loved ones. Susie’s best advice? Find your support system and surround yourself with people you completely trust. "IVF is not an easy road for anyone—especially someone with an underlying condition. Do your homework, find the people you trust. Until you have a reason to think otherwise, keep moving forward."