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After a Childhood of Disease, This Crohn’s Patient Looks to a Healthy Future

An active kid, James McKiernan had played basketball, volleyball and water polo before he fell mysteriously ill during his freshman year of high school in San Luis Obispo. During his sophomore year, he lost 50 pounds in a few weeks. He was airlifted to a children’s hospital in Central California, where physicians tried a variety of medications. But James continued to weaken, and malnourishment threatened his life.

James saw world renowned gastrointestinal specialists (GIs) at several academic institutions, but none saw him for what he was, a young man with the potential for a full life ahead of him.

“For patients who are children, the aspect of being isolated, of having none of your peers understand what’s happening to you – it really takes away your life,” James said. “A big thing with renowned GIs is that they’re bad dealing with patients. They’ll be delivering terrible news and not understand how to put it lightly or be sympathetic.”

They also weren’t able to get his condition under control. Despite several surgeries, he continued to be plagued by inflammatory bowel disease flare-ups, and he spent much of his junior year of high school hospitalized.

“That’s when we realized we needed to go to a different doctor,” James said.

James’ older sister is a lawyer who relishes research. She dived into journals and studies and found Caroline Hwang, M.D., program director of the Margolis Family Inflammatory Bowel Disease Program at Hoag. From the start, Dr. Hwang was considerate, reassuring and compassionate. It was also clear that she is at the cutting edge of her field.

Thanks to the generosity of Jeff and Debbie Margolis, Hoag was able to recruit Dr. Hwang and develop the Margolis Inflammatory Bowel Disease Program.

Dr. Hwang diagnosed James with Crohn’s disease, which affects more of the digestive tract and should be treated differently than doctors had treated him in the past.

“When I went to Dr. Hwang, it was clear that she was going to take care of me,” James said. “She’s brilliant and friendly. She’s at the forefront of the field, and you know that she’s going to have your best interest at heart.”

Dr. Hwang was able to craft a long-term plan tailored for James, his condition and his quality of life.

“My goal as an IBD specialist is to give patients back as normal of a life as possible, and to get them back to doing the things they loved before developing this difficult disease,” said Dr. Hwang. “The therapies for IBD have advanced considerably, resulting in higher efficacy and less side effects. But the key to ensuring long-term remission is to use a proactive (instead of reactive) approach where we ensure the medications and individualized dietary plan are fully healing the bowel.”

James said he felt that compassionate, specialized approach throughout Hoag. Having spent so many years in and out of hospital settings, James is something of a reluctant expert in in-patient care.

“I love the staff, the facilities, even just how clean and spacious it is,” James said of Hoag. “It’s a less stress-inducing environment to be in. Everyone is so friendly, and they think of the small things, too. Like giving you a warm blanket when you’re waiting for your procedure.”

After two years of not being able to do anything, James now does everything. He surfs, sometimes for three hours a day. He mountain bikes. He keeps up with his classes and social life while maintaining a high-stress internship in finance.

“I’m having the most normal college experience you could have asked for – even with the pandemic. I’m super grateful,” he said. “Holistically, Dr. Hwang’s improved my quality of life. I wasn’t able to play sports my senior year, but now I can surf for three hours straight. I can mountain bike 30 miles. I can lift weights. I was able to put on 70 pounds of muscle. I never thought in my life that I’d be able to naturally put weight on again.”

More impressively, the inflammation is gone. While there is no cure yet for his disease, James feels confident about living a normal life. After several harrowing years, he can look to the future with hope.

“Dr. Hwang helped me to regain a life again for myself, rather than be afraid of the disease,” he said. “I am so grateful for all that she’s done. It’s been life-changing.”

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