Raising the Bar on Inflammatory Bowel Disease
Patient advocate, spokesperson, fundraiser and law student, Ally Bain has not let inflammatory bowel disease (IBD) stand in her way.
A well-known figure in the IBD community since her early teens, Bain was instrumental in drafting Ally's Law, restroom access legislation for anyone with a medical emergency, currently in effect in 15 states. During college, she expanded her advocacy work, spreading awareness and raising funds for the Crohn's and Colitis Foundation of America. Now in her first year of law school, Bain plans to pursue an area of law that includes a public interest component.
"Her resilience in the face of her disease -- and what she has accomplished -- are an inspiration to her physicians and to many patients," said David T. Rubin, MD, co-director of the Inflammatory Bowel Disease Center at the University of Chicago Medicine. Rubin began treating Bain for Crohn's disease in 2005 when she was 14, shy and afraid of doctors. Today, he regularly invites Bain to speak to patients about IBD and the two often work together to educate the public and government officials.
Nothing less than remission
Bain still remembers what Rubin promised her the first time they met: "You will be in remission within six months." Bain responded well to infliximab, a biologic therapy that targets an inflammatory protein in the body. Over the past decade, the regular infusion therapy has kept Bain's disease in remission. She continues to see Rubin every four to six months for monitoring.
"I tell my patients to expect nothing less than remission," Rubin said. "And if they are not there, we will keep working on it. We want all of our patients with inflammatory bowel disease to have the stability and good health that Ally has achieved."
Rubin encourages patients to stay informed about IBD and the advances in treatment and research. "The more patients know, the less out of control they feel," he said. Rubin and his colleagues share the latest information about the rapidly changing field through regular community education events and social media.
At the University of Chicago Medicine, patients can expect individualized care for Crohn's and ulcerative colitis as well as access to the latest clinical trials, which include fecal transplantation and worm therapy. On the horizon: a gut-specific biological therapy that targets receptors only in the bowel, reducing side effects.
In addition to offering innovative therapies and leading edge technology, the IBD Center ties clinical work to basic and translational research. Studies focus on identifying the causes and understanding the mechanisms behind IBD, the function of the microbiome in digestive diseases, and the role of environment and diet.
This story originally ran in the Winter 2014 issue of Imagine, a quarterly magazine published by the University of Chicago Medicine.
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