For Years, Doctors Thought I Was Anorexic. It Turned Out, I Have Crohn’s.

woman experiencing abdominal pain, mid section

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A decade ago, Julie Linzer was just a few months away from graduating from college when she lost more than 20 pounds seemingly overnight. “I’ve always been on the thin side, but I quickly went from being a solid 97 pounds to 73 pounds,” says Linzer, 31, who is five feet tall. “I was skeletal—and scared.”

She immediately booked an appointment with her internist, who told her that she either had an eating disorder or psychological issues. “My doctor wrote me off,” says Linzer, who lives in Oceanside, New York, and most recently worked in a hospital pharmacy. “He immediately thought I had anorexia. But I had none of the symptoms!”

A step forward, two steps back.

What she was experiencing was something new. She could barely eat, out of fear that anything she consumed would immediately prompt awful gastrointestinal issues. “One day something would be okay to eat, and the next day that same food would bother my stomach,” she says. “I was always on the constipated side and then it became a situation where I wasn’t going to the bathroom at all. I was in a lot of pain.”

In 2012, Linzer was hospitalized for 10 days with pneumonia. During that stay, a scan revealed abscesses all over Linzer’s intestines, which her doctors concluded was the cause of her distention and other GI issues. She left the hospital with an intra-abdominal drain and, over the course of the next six months, she began to feel a lot better. “I started gaining weight,” she says. “But I soon realized that the drain was more of a bandage than a real fix.”

“My doctor wrote me off.”

A year later, she was well enough to be in the bridal party at a friend’s wedding. But when she looked at the wedding photos later, she noticed that she was still distended. In addition, she was developing other symptoms, including one that really upset her: discharge that seemed like it might be a yeast infection.

“When I saw that, I went right to my gynecologist,” she says. “I went to him a few times because my symptoms weren’t improving. That’s when he said I must have an abscess draining from my vagina.”

The turning point.

Her gynecologist sent her to a urogynecologist, and Linzer says it was this specialist who made her feel seen. “He took one look at me and said ‘I don’t know what’s wrong with you, but you need surgery and we’re going to find out,’” she recalls. “For the first time, I felt like a person. I felt like no one was listening to me up until then.”

The next step: An appointment in 2015 with a colorectal surgeon and, after a colonoscopy came back with normal results, she was sent for magnetic resonance enterography, an imaging test that takes photos of your small intestine. “The surgeon told me he didn’t know how I was standing up given what was happening in my body,” she says. “He explained that I had a huge abscess on the left side of my lower pelvis near my ovaries and that was why I was draining fluid.”

Finally, a diagnosis.

After years of being told she had an eating disorder, she was finally diagnosed with Crohn’s disease, a type of inflammatory bowel disease (IBD) that causes inflammation of the digestive tract. For Linzer, her greatest regret about those years when her condition was considered a mystery is that she didn’t talk about it enough with her friends.

“I wish I had shared more.”

“I would be out with them and refuse something to eat or drink because it felt like my insides were eating me, but that’s not the most fun thing to talk about,” she says. “I think we’re quick to make a visual assessment about someone instead of speaking to them about how they’re feeling. I wish I had shared more with them.”

Forging a path forward.

These days, Linzer gets infusions every eight weeks, a magnetic resonance enterography every six months, and an annual endoscopy and colonoscopy. Her weight now ranges between 115 and 120 pounds. And while she has been nervous about leaving the house during the pandemic, and is unsure when she will get the COVID-19 vaccine, she’s hopeful about her future.

“There’s a lot of give and take in terms of me getting the vaccine,” she says. “My medical team doesn’t want me to get it right now because it could have a detrimental effect and they know how far we’ve come.”

Ultimately, she will rely on her team of experts. “I will do whatever they say,” she says. “They saved my life.”

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