Barry Thys has lived through a medical revolution. He was diagnosed with ulcerative colitis when he was a child. At 43, with increasing flare-ups of his disease, he took a newly developed blood test that determined he really had Crohn’s disease. Now at 59, he has experienced the spectrum of medications for inflammatory bowel disease (IBD) and surgery as well.

“I had the standard course of sulfa drugs in the ’90s and had violent reactions to them with nausea and red flushing,” says Barry. “With prednisone I had a ‘moon face’ or swelling in my face and was worried about the long-term effects of steroids.” He experienced many complications with Crohn’s and bad reactions to most IBD medications. He has pain when eating, developed fistulas (abnormal passageways connecting one organ to another) and was recently hospitalized for his disease.

But now he has started on a newly FDA-approved drug for IBD called vedolizumab. “It’s too early to say if it is going to help him, but he has been donating blood to our IBD biorepository to measure the effects of this drug and correlate it with clinical outcomes in an effort to better guide IBD therapy for patients like him,” says James Lord, MD, PhD, Benaroya Research Institute researcher and gastroenterologist at Virginia Mason Medical Center.

BRI scientists are studying the blood of patients with autoimmune and immune diseases to see how drugs impact their immune system. If they can see the medication’s effect early on, they can determine to give more or less of the drug or to switch to another drug. “Track records” of people’s experiences can become guidelines for personalizing medicine for a patient.  

“If any good can come of my bad experiences I’m happy to help,” says Barry. “Why not share my experience with researchers who can use the information? Research is important to me because it is paramount to moving forward. If research was never done, we wouldn’t have the new immunotherapy drugs with better results and less side effects. We need to learn more about the disease and treatment so the next generation doesn’t have to suffer like this generation.”

Dr. Lord is grateful for the dedication Barry has to research and his efforts to help. Barry appreciates that Dr. Lord is on the cutting edge of research. “Dr. Lord is 100 percent engaged with me and keeps me informed on new ways to deal with my Crohn’s. I stay positive and receive great support from my family, friends and the people at Virginia Mason and Benaroya Research Institute.” To learn more, visit our IBD disease information.

Did You Know?

• Crohn’s disease and ulcerative colitis (UC) are both known as inflammatory bowel disease (IBD).
• In IBD, the body’s immune system attacks the intestines, resulting in intestinal inflammation, abdominal pain and bleeding.
• IBD affects approximately 1.4 million Americans about evenly divided between Crohn’s disease and UC, and between men and women.
• These diseases can often appear in young people, leading to many years of suffering and disability.
• IBD is more common in northern latitudes, like the Pacific Northwest, where an estimated 50,000 IBD patients are thought to reside.
• Some possible factors that may contribute to this geographic effect are vitamin D deficiency from lack of natural sunlight, genetic predisposition in the North European/Scandinavian heritage, and unknown environmental triggers.

Originally Published in BRING IT ON Newsletter - Winter 2014