Michelle Schwartz was 12 years old when she started having severe stomach pains. Soon she learned a secret her parents had hoped she would never need to know.
“When the doctor asked my mom about our family history, she said that my dad has Crohn’s disease,” says Schwartz, who is now 28. “I had no idea — they didn’t want me and my sister to know how bad it had been for him.”
A family history of Crohn’s
It wasn’t just her dad.
At age 7, he had watched his own father pass away after multiple surgeries for Crohn’s disease. Schwartz also had an aunt who passed away from complications of Crohn’s.
“Looking back now, it’s clear something had been wrong since I was a baby,” Schwartz says. “I was always complaining of stomachaches.”
A type of inflammatory bowel disease
Crohn’s disease is one of two types of inflammatory bowel disease (IBD); the other is ulcerative colitis (UC).
“Crohn’s disease can occur in the esophagus, colon or small intestine, while ulcerative colitis affects only the colon,” explains Dr. Nimisha Parekh, director of the UCI Health Inflammatory Bowel Disease Program, the region’s only comprehensive center devoted to treating patients with these conditions.
Disease often strikes in teen years
Both Crohn’s and UC cause chronic inflammation in the digestive system that can lead to debilitating stomach pains, diarrhea and the need to frequently use a bathroom.
IBD is most often diagnosed when people are in their early teens, a time when symptoms can be particularly disruptive for adolescents who are trying to attend school, date and live active social lives.
“After I was diagnosed, treatment got me into remission, but my normal was still very different than my friends’ normal,” Schwartz says. “I had a lot of anxiety around going to the bathroom, and I had to plan my life around that. Traveling anywhere was hard, and I would never go to sleepovers at my friend’s houses.”
Treating IBD effectively
The exact causes of IBD are not well understood.
“We think it’s partly a dysfunction in the immune system combined with a genetic predisposition,” Parekh says. This complex condition also is affected by diet, stress and other factors.
Treatment requires a multidisciplinary approach as well as an individualized care plan for each patient, which can include a mix of medications, surgical procedures and lifestyle changes.
The program’s team includes IBD-trained gastroenterologists, colorectal surgeons, nurse navigators, pathologists, radiologists and clinical social workers, all of whom who work together to help their Crohn’s and UC patients live a normal life.
UCI Health, as the only academic medical center in Orange County, also gives patients access to the latest therapies, clinical trials and research studies on the causes and best approaches to treating IBD.
“IBD is so much more than one disease process, so this multifaceted approach is required in order to deliver good, comprehensive care,” says Dr. Sandra Sunhee Park, an IBD-trained gastroenterologist with the IBD program.
“Given the current research advances in IBD care and the advent of new therapies, it’s an exciting time to be involved in caring for IBD patients.”
Stress affects the condition
Schwartz knows well how stress can affect her condition.
About the time she graduated from a college in Thousand Oaks, she wound up hospitalized. “I could feel that my medication wasn’t working anymore, so I started on more frequent, higher doses, then on a different medication. But nothing really worked.”
After months of pain, significant weight loss and a multitude of tests, a new doctor finally discovered that Schwartz had developed a fistula in her intestine and two abscesses, including one that sat on her bladder, all of which had to be surgically removed along with a foot of her intestine.
For the next few years, her condition remained relatively stable. But as she finishing graduate school in 2013, she suffered an outbreak of ulcers in her colon.
“I had just gotten a job in Orange County, so I decided to try UCI Health,” she says. “From my first appointment with Dr. Parekh, I realized they provide a level of care I hadn’t experienced before.”
Finding a treatment that works
That year wound up being one of the hardest of Schwartz’s life.
It included hospitalizations for liver inflammation, intestinal infections and other complications.
“My boyfriend had been planning to propose, but I could barely get off the couch,” Schwartz says. “He put it off until I got better, and we got married in October 2016.”
In the summer of 2015, Parekh and Schwartz finally found a medication that worked. She was even able to travel for her honeymoon the following year.
“We went to Costa Rica and didn’t compromise on the wedding, even though traveling with Crohn’s can be really challenging,” she says. “I’ve been good ever since.”