Ulcerative Colitis Second Opinion: Clarice's Story
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Ulcerative colitis drained Clarice of energy. By the start of junior year of high school, it was robbing her of hope, too. Clarice was worried about her academic performance — and her chance of getting into the college of her choice. But after seeking a second opinion from the Center for Pediatric Inflammatory Bowel Disease (IBD), her condition is under control, and the 17-year-old has ambitions to attend medical school.
Clarice was vacationing at Bryce Canyon National Park during the summer of 2016 when the diarrhea started. Her family attributed it to travel, but the diarrhea continued after she returned home, and it worsened as the year wore on. In school, Clarice suffered stomach cramps after lunch and had difficulty focusing on her studies. She barely made it through cross-country practices and meets.
Clarice’s pediatrician had her checked for food allergies and other possible causes, but each test came back negative. In January, she saw a local pediatric gastroenterologist, who ordered a colonoscopy and endoscopy. The diagnosis was ulcerative colitis.
Clarice’s symptoms improved with steroids and medication, but returned each time her GI doctor tried to wean her off the steroid that kept her inflammation in check. By the spring of 2017, severe cramping and chronic diarrhea were waking Clarice up three to four times during the night. She was using the bathroom 10 to 12 times per day, always checking that one was in close range. Running track was out of the question that season. Clarice was losing weight and her family was feeling desperate. Adding to their turmoil was the hidden nature of the illness.
“It was hard because nobody really understood what was going on. Even when I was so sick and wasn’t feeling well at all, I looked normal. It was hard for people to see that I was suffering,” Clarice says.
In late March, Clarice was admitted to a local hospital for intravenous steroids and bowel rest. A family friend urged her parents to bring Clarice to the Center for Inflammatory Bowel Disease (IBD) at Children’s Hospital of Philadelphia (CHOP).
The family made the two-hour drive south to CHOP’s Main Campus, where they saw Lindsey G. Albenberg, DO, an attending physician in the Division of Gastroenterology, Hepatology and Nutrition and a member of the research team in the Center for Pediatric IBD.
Dr. Albenberg prescribed biweekly injections of a biologic, which Clarice would administer herself while continuing the steroid. Clarice’s symptoms improved slightly, but as before, returned when the steroid was reduced. The same thing happened when Dr. Albenberg increased the dosage to weekly injections.
“It was just a rollercoaster ride. With each new medicine, there would be this new hope. This would be it, she would get better,” Clarice’s mother says. “We kept hoping that the right medicine was just around the corner, but again, it failed. It was a hard time for all of us.”
By the end of the summer 2017, Clarice had lost 25 pounds, reducing her 5-foot-8-inch frame to 120 pounds. She was going into her junior year sick and drained of hope that she would ever get better. Dr. Albenberg ordered a second colonoscopy, which showed that the disease had progressed to a more severe state. Clarice’s entire large intestine was inflamed.
Clarice’s parents agreed to Dr. Albenberg’s recommendation to start their daughter on a different biologic, delivered via infusion at CHOP’s Main Campus every seven weeks. Dr. Albenberg also prescribed three different antibiotics and a medication that reduces the chance that Clarice would develop antibodies to the biologic.
Shortly after the first infusion, Dr. Albenberg began to taper Clarice off the steroid. This time, Clarice’s symptoms did not return, and she was eventually able to stop the steroid entirely. During the fall of 2017, more than a year after the first symptom of ulcerative colitis appeared, Clarice began to regain weight. The stomach cramps and trips to the bathroom were in the past. She threw herself into academics and extracurriculars. “I was so happy to be getting my normal life back and having control over my body again,” she says.
Then, half of her hair fell out. “I was just like, are you kidding me?” Clarice remembers.
Dr. Albenberg referred the family to the Dermatology Section at CHOP where Clarice saw Leslie Castelo-Soccio, MD, PhD, a specialist in hair loss. Dr. Castelo-Soccio told Clarice that the shock of rapid weight loss and iron deficiency likely contributed to the condition. Her hair would resume its normal growth and fill in over time.
Clarice was stoic about the hair loss. “That was pretty annoying, but at the same time, if this is what I have to give up to get my life back, it’s worth it,” she says.
Now with two college acceptances in hand and awaiting word from the other schools she applied to, Clarice is ready for life after high school. Her hope is to major in biochemistry on a pre-med track. As for her career focus, Clarice is interested in gastroenterology. She wants to give others hope, just as her doctors did for her. Until then, she’s doing what she can to let other kids know there is no shame in having an inflammatory bowel disease.
“There’s a really big societal issue with the stigma that surrounds it,” she says. “It’s kind of uncomfortable to share it with other people. But I’m sure so many other kids living with this have gone through the same thing, and it’s really nice to be able to share my story with them.”