After being diagnosed with Crohn’s disease at 21, Jessica Caron went on to have two healthy pregnancies. Now she’s working to help other women know they can, too.

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Jessica Caron is on a mission to help women with IBD feel empowered to make the best family planning decisions for themselves. Image via Jessica Caron

Jessica Caron was a carefree college student on spring break when she first noticed what would later be revealed as the symptoms of Crohn’s disease.

Just 20 years old and heading off to a relaxing week in the sun with friends on Grand Bahama Island, the symptoms hit her out of the blue: nausea, stomachaches, intense vomiting.

The unpleasant reality of living with Crohn’s suddenly became, as Caron calls it, “the new normal.”

On her popular blog, Chronically Jess, which chronicles her experiences with the disease, Caron writes that she was suddenly “thrown into chronic illness with force,” going from life as usual one day to suddenly dealing with the stigmas of Crohn’s right away.

She describes it as a “loss of control, fear of my own body, embarrassment, pain, sadness, anxiety, hiding the truth of my experience, and the guilt of how MY illness could quickly ruin things for everyone around me.”

She received a formal diagnosis at 21.

Flash forward nearly a decade later, and Caron is now a mother of two, sharing her experiences living with Crohn’s with a wide audience through speaking engagements and her writing.

She’s working with the American Gastroenterological Association (AGA) as a patient advocate for its new IBD Parenthood Project, an online resource that tries to dispel misconceptions and answer questions that women living with inflammatory bowel disease (IBD) — and their healthcare providers — might have while juggling family planning, pregnancy, and managing a condition like Crohn’s.

“It’s incredibly important that women don’t feel they have to go through this alone. There are tools out there to reference, and women should talk to their doctor about this as early and often as they can,” Caron told Healthline. “It’s great that there is this resource out there for women.”

IBD is an umbrella term for a group of conditions, such as Crohn’s and ulcerative colitis, that cause inflammation of the gastrointestinal tract.

IBD can be highly variable. There’s no one-size-fits-all treatment plan. At the moment, there’s no known cure.

In 2015, the Centers for Disease Control and Prevention (CDC) estimated that 1.3 percent of adults — or 3 million people — received an IBD diagnosis in the United States.

The numbers have been increasing. Diagnoses stood at 2 million people in 1999.

Living with the complexities of Crohn’s or ulcerative colitis while planning to start a family can be stressful. All of the usual work and care that goes into ensuring a healthy pregnancy is coupled with worrying about flare-ups, eating the right foods, and collaborating with a team of medical professionals.

Caron, who’s currently working on a master’s degree in healthcare delivery sciences at Dartmouth College, wasn’t even ready to start a family when she started asking her doctors about how to manage the disease and pregnancy.

Like many people with IBD, Caron says her road to diagnosis was frustrating.

She had doctors early on who dismissed her concerns as stomachaches and common colds. In fact, she writes on her blog that one doctor waved her concerns away with an explanation that she just had the flu.

“During our brief encounter,” she writes, “he feigned interest in my file, looked up, sighed, and replied with a sense of boredom, ‘Jess, what you have is the flu. I need you to suck it up here.'”

It took a year between the appearance of her first symptoms during that college trip and her official diagnosis.

It was a relief to be able to finally put a name to her symptoms.

“Crohn’s wasn’t even on my radar when I started experiencing symptoms. I had never even heard of it,” Caron said.

Shortly after her diagnosis, she began asking questions about what would happen during pregnancy. While she wasn’t ready to start a family, Caron was concerned about her life down the line.

“I was concerned about how this disease was going to impact my life in the long term. I started researching that question long before I got pregnant,” she said.

“Talking to my doctor early was one of the best things I ever did. He and I made a treatment plan, put together a strategy before getting pregnant, waited until I was in remission from Crohn’s to get pregnant. We wanted to ensure I had the healthiest pregnancy possible,” Caron explained.

“Because of this, by the time I became pregnant, I wasn’t confronted with lots of fears and concerns, because we’ve been talking about this stuff for years,” she added.

Having these early conversations, asking the right questions, and dispelling myths are key to the goals the AGA set in starting the IBD Parenthood Project.

A collaboration between the AGA, Society for Maternal-Fetal Medicine, Crohn’s and Colitis Foundation, and the patient support network, Girls With Guts — the project’s website is a pretty comprehensive resource that ranges from providing prospective parents with everything from a list of questions to ask doctors, to important facts on what a person should know about managing IBD.

One particular problem the project aims to tackle is the fact that many women with IBD avoid pregnancy altogether, because they’re scared of complications that could arise from the condition.

“The IBD Parenthood Project addresses the disconnect between all the evidence we have on IBD and pregnancy and what is actually in practice,” said Dr. Uma Mahadevan, a professor at the University of California, San Francisco Colitis and Crohn’s Disease Center.

“There are a lot of misconceptions out there, like you can’t get pregnant with IBD. Women with IBD are more likely to be voluntarily childless. There is a dangerous myth that you need to stop all of your medications because they would result in a high-risk pregnancy,” she said.

Mahadevan, who chairs the IBD Parenthood Project, says that that particular myth of stopping medications is especially bad.

If you’re using medications to treat your IBD symptoms and inflammation, you don’t want to suddenly cease treatment altogether.

“A lot of people automatically default to stopping all medications during pregnancy. They think ‘Oh no, that can’t be good for the baby.’ A lot of these misconceptions and fears started because a lot of the medicines we have are relatively new. It took time for the data to come out to support this project,” she said.

Mahadevan and her team recently published a clinical guide for treating IBD during pregnancy in the journal Gastroenterology.

She stresses that it’s key that both the person with IBD and their doctors be on the same page over the course of the pregnancy.

“The thing I tell my patients and what my care pathway emphasizes is the preconception planning phase,” Mahadevan stressed.

“If a woman is considering becoming pregnant, it’s important to go over all the risks and benefits, to go over healthcare maintenance, the nutrition status, disease activity. You want to make sure that everything is optimized ahead of pregnancy.”

Dr. Benjamin Click, a gastroenterologist at Cleveland Clinic who’s not affiliated with this project, said that it’s important that IBD is under control and well managed before and during pregnancy.

He echoed Mahadevan in emphasizing that it needs to be “a coordinated team effort” between both the obstetric and gastroenterology doctors so that everyone is on the same page.

When it comes to IBD medications, most are safe to take during pregnancy.

However, Click said two exceptions are methotrexate, which should be stopped at least three months before pregnancy and tofacitinib, which he said is one that doesn’t have enough information supporting it yet.

“A healthy mother is a healthy baby. We want our patients in remission during pregnancy. This means continuing most IBD medications and working with the gastroenterologist before, during, and after the pregnancy to ensure a healthy outcome for both mother and baby,” Click told Healthline.

“We generally recommend a pre-pregnancy visit to discuss pregnancy planning, at least one visit during the pregnancy to monitor the IBD, and a post-delivery checkup.”

He added, “An overall healthy lifestyle during pregnancy is important — healthy eating, no smoking or alcohol, staying active, and stress reduction.”

Mahadevan added that if a woman with IBD is in remission and on the right medications at the start, she’s unlikely to experience flares. This should be the case in the postpartum period.

She said that most postpartum flares occur when someone “erroneously stops medication.”

“It’s important to monitor a woman’s nutritional status, she’ll increase caloric requirements during pregnancy and in the postpartum. A lactation specialist can also be particularly helpful for women during this time,” she said.

Click also pointed out that having a newborn is a wonderful, but stressful, time as well.

“There is an increased risk of IBD flare after delivery, so remembering to take medications and checking in with the gastroenterologist is important. I recommend to set cell phone alarms for daily medication reminders or calendar events for important dates — infusions, injections, refills,” he added.

“Women with IBD are also at higher risk of postpartum blues so monitor for any emotional difficulties during this period. Lastly, if you have any difficulties whatsoever, always reach out to your doctors,” he said.

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“Talking to my doctor early was one of the best things I ever did. He and I made a treatment plan, put together a strategy before getting pregnant, waited until I was in remission from Crohn’s to get pregnant,” said Caron. Image via Jessica Caron

Caron was thrilled to have two healthy pregnancies while managing her IBD. She said her main word of advice for others would be to begin talking to your doctors as soon as you feel comfortable.

She said having a resource like the IBD Parenthood Project is also helpful because there’s so much contradictory information out there.

“I had to go through a lot of trial-and-error research. There was a lot out there that wasn’t evidence-based. I had a difficult time navigating all of the information online. My doctor, my clinician, ended up being my best partner to sift through the data together,” Caron explained.

“That took a lot of time and not every clinician has that time. Not every patient feels empowered and comfortable all the time. So, it’s important to have this place to find that information,” she added.

Today, Caron says she’s in good health and her two young sons are her “biggest cheerleaders.”

Mahadevan said the “key takeaway” from experiences like Caron’s is that a woman can have a healthy pregnancy while living with IBD.

For Caron, it’s about feeling empowered.

“I think the patient experience is so important — it was for me,” Caron said. “The fact that there is a patient resource that has come out is a powerful advancement in how we view this and understand what the patient knows and fears. It’s about supporting women to feel empowered to make the best family planning decisions for themselves.”