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From patient to advocate for people with Crohn’s disease

June 18, 2024 | Paul Taylor
inflammatory bowel disease patient rocio castrillon with hands on hips wearing medals white hat black and white leggings and orange tank in front of a water fountain after running in a race
“I am beyond fortunate to be a UCI Health patient because of their multidisciplinary approach to care,” says Rocio Castrillon.

In 2008, Rocio Castrillon had reached a point of desperation after five years of suffering from perianal fistulas, small openings that form near the anus and become infected, and multiple surgeries to fix them.

It was her community surgeon who ultimately referred her to UCI Health for more specialized care. There, colorectal surgeon Dr. Michael J. Stamos diagnosed her with Crohn’s disease, a type of inflammatory bowel disease (IBD). He immediately sent her to his colleague, IBD specialist Dr. Nimisha K. Parekh, who has helped manage Castrillon’s complex case.

“Rocio has a complex medical history, including her Crohn's disease, which required her to have multidisciplinary care with gastrointestinal and colorectal surgery,” says Parekh, medical director of the Inflammatory Bowel Disease Program, which is part of the UCI Health Digestive Health Institute.

“The main goal was her quality of life and to keep her well.”

Coordinated care for complex case

Castrillon is grateful for the coordinated, expert care she received at the institute, one of the few multidisciplinary academic digestive health centers in the nation. The management of her case was complex, involving multiple specialists and surgeries that were both directly and indirectly related to her IBD.

“I am beyond fortunate to be a UCI Health patient because of their multidisciplinary approach to care,” she says.

“With all of my providers committed to research, I feel that I am receiving the best care available with the most knowledgeable and thorough specialists in Orange County.”

Castrillon praises Parekh for her holistic approach to IBD, a condition that does not have a one-size-fits-all treatment.

“She has always taken into consideration the ongoing factors in my life that may be playing a role in my disease journey.”

Advocating for others

Castrillon became a volunteer with the Crohn’s & Colitis Foundation after her diagnosis to serve as an advocate for others who may be newly diagnosed with IBD and trying to navigate the healthcare system. In 2024, she joined the Foundation’s National Board of Trustees, where she supports the work of the Foundation by providing leadership, strategic oversight, and philanthropic commitment.

“I’m committed to IBD patient advocacy and to expanding accessibility to quality information, resources and research in English and Spanish.”

Castrillon says her quality of life has improved significantly since coming to UCI Health. Thanks to the management of her condition, she can devote her energy to patient advocacy, her marketing career and participating in walking events to raise awareness and funds for IBD and the Foundation.

Parekh marvels at how Castrillon has met every obstacle in her path.

“Rocio has gone through multiple challenges with her health and she has not let it affect her. Instead, she has turned this experience into a positive by being an advocate for patients with IBD, especially for the Latino community.”

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