Just months after celebrating her 17th birthday, Jade Wilson’s legs seemed to be working against her. She stumbled when she walked, and her joints ached.
“I thought maybe it was a bad muscle sprain,” said Jade, 18, now a high school senior living in Los Angeles. “I was in denial that anything could be seriously wrong.”
Then came a flood of other strange symptoms: mouth sores, diarrhea, and skin abscesses. Her appetite started to fade, and she dropped 20 pounds. “I was hungry, but food didn’t seem appealing,” she said.
When her leg pain became too much to bear, Jade finally told her mother, who brought her to UCLA Health. After multiple MRI scans, tests, and visits with a revolving door of specialists, Jade was sent to Hassan Hamandi, MD, a gastroenterologist and director of UCLA’s Pediatric Inflammatory Bowel Disease (IBD) Program at UCLA Mattel Children's Hospital.
The Pediatric IBD Program provides comprehensive, individualized diagnosis and treatment for children and adolescents affected by inflammatory bowel diseases such as Crohn's disease, ulcerative colitis and other intestinal disorders.
A colonoscopy — a medical procedure that allows a doctor to examine the colon — confirmed the diagnosis that Dr. Hamandi had suspected: Crohn's disease.
Jade’s diagnostic odyssey was not uncommon.
“It can take one or two years after symptoms develop and visits with multiple doctors before they identify Crohn's,” Dr. Hamandi said. “It can often be confused with arthritis or other chronic conditions.”
That’s because Crohn’s, a chronic inflammatory bowel disease, can look very different from one patient to another. Abdominal pain, fatigue, and fevers are common, as are joint pain, mouth ulcers and other signs of inflammation throughout the body.
Jade’s initial relief after finally receiving a diagnosis was quickly followed by confusion and fear.
“I was overjoyed for 10 seconds,” she said, “and then my mind went to, ‘How do I fix this?’”
Her medical team informed Jade that Crohn’s is a “lifelong” autoimmune disease, but with the right treatment, she could go on to live an almost entirely normal life. In addition to Dr. Hamandi, Jade also regularly sees a rheumatologist and a social worker, who ensures Jade has the resources and support she needs at school and beyond.
“They told me that people live with it, that it wasn’t going to be the end of the world,” Jade said.
Managing the disease
Crohn's disease can be maintained with biologic medications, which are delivered by subcutaneous injections or transfusions. Jade opted for the latter and received transfusions — a three-hour process — every few weeks at UCLA Mattel Children's Hospital.
Initially, Jade tried returning to school on her transfusion days, but she found that the process made her so fatigued, that focusing on schoolwork was nearly impossible.
Luckily, after the third round of transfusions, Jade’s leg pain and other symptoms almost completely dissipated. Now, her transfusions are spaced out to every few months, and she sticks to a special diet to keep healthy.
“Her symptoms have dramatically improved,” Dr. Hamandi said. “She’s been in remission since starting treatment earlier this year.”
Since chronic autoimmune diseases require lifelong maintenance and attention, Dr. Hamandi said that teenagers diagnosed with Crohn’s ulcerative colitis often demonstrate a level of maturity that exceeds their peers: “Jade is a perfect example of that.”
‘Trusting the process’
Jade said she is grateful to Dr. Hamandi and her entire UCLA Health medical team for helping her to realize that her disease is manageable.
Her advice for other adolescents who are newly diagnosed with Crohn’s disease?
“While it definitely seems to be really scary, Crohn’s isn’t going to derail your life,” she said.
On days she is in pain or feels overwhelmed by the reality of living with a chronic illness, she engrosses herself in one of her favorite hobbies — watercolor painting.
“Watercolor dries quickly, so the mistakes you make are pretty much permanent,” Jade said. “Some days, when I was really upset about not being able to do the things I used to do before I was sick, I would quickly sketch something and fill it in with watercolor.
“It really helped me get out my frustration, because I wasn’t worried about making a perfect picture — it’s about accepting the mistakes and trusting the process.”
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UCLA’s Pediatric IBD Program empowers young patients to take control of their health
