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Crohn’s patient says don’t give up

It often takes many years of misdiagnosis before those with Crohn’s disease finally find out about their Crohn’s diagnosis.

It took eight years of mistaken diagnoses before Jaime Weinstein finally got a correct one — Crohn’s disease — for abdominal pain, bowel problems and assorted illnesses that dominated her teenage years.

Menstrual problems, mental issues, gastritis of unknown origin and irritable bowel syndrome were among the incorrect causes suspected and treated before the right answer finally came when she was 23 years old.

The Tampa Bay resident, an advocate for patients with Crohn’s or other inflammatory bowel disease, said she picked up every stomach bug known to mankind as a child and spent most of her high school years on a medically homebound instructional program.

She went through three pediatric gastroenterologists, she said, one of whom reduced her to tears when he said “tell the patient to drop her pants and bend over.”

“They couldn’t figure out what was wrong with me,” she said. “If they had done a colonoscopy, they might have found something quicker.”

Her experience is at one end of the spectrum, Weinstein said, mentioning another Crohn’s patient she met, a man, whose more recent diagnosis came quickly and without misdiagnosis.

“When I look back at all the things that were missed as a teenager, it breaks my heart,” said Weinstein, now 36, a freelance writer who tries to make sure other patients get a more rapid diagnosis.

“Push for answers,” she advised. “Don’t let them say ‘no.’”

It’s common for patients to see many healthcare providers, make many office visits and go through multiple tests before they get a correct diagnosis, a national survey of Crohn’s disease patients in late 2015-early 2016 found.

Once diagnosed and getting treatment, however, the survey by Health Union found about 75 percent were happy with the care they were getting.

Read on: Crohn’s patient says don’t give up

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