The Courage to Live with Crohn's Disease
How to Keep Moving With Crohn's Disease: Janice's Story
Janice Chavkin was just 13 when she started experiencing Crohn's symptoms, but she refuses to let severe Crohn's disease keep her down.
By Diana Rodriguez
Medically Reviewed by Kareem Sassi, MD
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At 13, most young girls are giggling with friends, fixated on fashion, and plotting how to escape their embarrassing parents in public. But when Janice Chavkin was trying to enjoy her summer at sleepaway camp as a teenager, she became puzzled by some startling changes in her health.
She went to the bathroom one day and saw blood in her stool. Frightened, she went to the infirmary. The doctor told her she was fine, and she stopped worrying about it. But then she noticed that every time she ate, she had severe pain and bloody stools — so she basically stopped eating. This lasted for about two years, says Chavkin, before her parents took her to another doctor, one who suggested she be checked for Crohn's disease.
Chavkin, now 43 and a real estate agent and small-business owner in Melville, New York, was diagnosed with Crohn's disease when she was 15 years old. She was relieved to finally find out what was causing her symptoms, and to start getting treatment. But at the time, steroids were the main therapy, says Chavkin, and they came with significant side effects — weight gain, acne, and moodiness.
"I became very withdrawn at school and stopped speaking to everybody because I was embarrassed by what I had," she says. For a kid in high school, having frequent diarrhea was particularly difficult, especially since she didn't know anyone else who had Crohn's disease.
By the time she entered college, Chavkin’s symptoms were so bad that she would rush out of class and not return because she would have to spend so long in the bathroom. Her grades dropped, and her embarrassment about her Crohn's symptoms grew as she had to sprint to the bathroom as often as four times a day.
At her first job out of college, she finally met someone else who also had Crohn's disease. The woman recommended Chavkin see her own doctor, who worked to slowly get Chavkin off steroids. About three years after stopping the steroids, Chavkin entered a clinical trial that was studying the drug Remicade (infliximab). "That was definitely life altering," she says.
What Crohn's Disease Took From Her
Because of Crohn's disease, Chavkin struggled with school and work — and with pain and embarrassment. But those trials were nothing compared to what Crohn's ultimately cost her.
Chavkin was pregnant with her third child when she had a bad car accident. She had stopped taking infliximab when she became pregnant because it isn't indicated for use during pregnancy. But after the accident, her disease grew out of control, and she went back on the drug, terminating the pregnancy rather than risk a baby with birth defects.
After about 10 years of taking the drug, and shortly after ending that pregnancy, Chavkin was diagnosed with cervical cancer and underwent a hysterectomy to remove her cervix and uterus. Chavkin believes her cancer was a side-effect of taking the drug Remicade. A review published in August 2013 in the journalMolecular Cancer found that people with Crohn's have an elevated risk of cancer that's associated with immunotherapy, such as Remicade.
How Chavkin Lives Well Today
Today, Chavkin is cancer-free and has managed to keep her Crohn's fairly well controlled. She knows what she shouldn't eat or drink to help prevent her Crohn's symptoms from returning. And for now, she's been able to escape the threat of surgery to treat Crohn's disease.
Chavkin is no longer embarrassed about her condition, but that doesn't lessen the impact that Crohn's disease has had on her life — and on the person she became.
"It really changed who I was," she says. But her doctor gave her a valuable piece of advice: No matter what Crohn's disease did to her, she mustn't let it stop her from doing what she needed or wanted to do.
"If I wanted to, I could sit around and mope and cry all day, but I'm not going to let it get there," says Chavkin who is currently training for a half marathon to raise money for the Crohn's & Colitis Foundation of America. “The next half marathon is in honor of my eldest daughter’s bat mitzvah. She is turning 13 soon — the age I was diagnosed with Crohn’s.”
Crohn's disease may have changed who Janice Chavkin became, but she refuses to let it dictate who she is now or what she can do. Chavkin is off and running toward a better, healthier future for people with Crohn's disease.
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