Father and Daughter Fight Through Crohn's Disease

Indiana State Detective Rick Strong, 46, spent an entire decade with two pieces of knowledge. The first was that he had Crohn’s disease. The second was that there was nothing he could do about it.

Victoria Strong and Rick Strong Victoria Strong waits with her father, Rick Strong, for an appointment in the Duchossois Center for Advanced Medicine.

In 1992, Strong, who lives in DeMotte, Indiana, was embarrassed at his new job as a juvenile corrections officer. He had to use the bathroom all the time. An athletic 28-year-old, Strong could barely make it through the day without feeling exhausted. He knew something was wrong when he dropped 40 pounds in a single summer.

Strong was diagnosed with Crohn’s disease that December, which was followed by eight years of various medications but no relief. During that period, Strong also had graduated from the police academy and was working as a state trooper, which meant long hours of sitting in place -- a nightmare for Crohn’s patients.

In 2000, Strong was referred to David Rubin, MD, co-director of the Inflammatory Bowel Disease Center. During their first conversation, over the phone, Rubin said something Strong had never heard before.

Roger Hurst, MD Roger Hurst, MD

"He told me I could get better," Strong said. "It moved me. I just broke down on the phone."

Rubin scheduled Strong for surgery with Roger Hurst, MD, associate professor of surgery. Hurst removed four different portions of Strong’s ileum, repaired his intestinal strictures and removed a fistula, an abnormal passageway that had formed between two separate portions of his small intestines.

The surgery helped Strong until the disease relapsed in 2007, which is normal for many Crohn’s patients. Rubin said he had to get more aggressive with Strong’s treatment. He prescribed a biologic therapy which unfortunately costs as much as $18,000 a year. When Strong’s insurance refused to cover it, Rubin enrolled Strong in the patient assistance program through the pharmaceutical manufacturer, which provided the treatment at no cost for two years. Since then, Strong’s disease has been in remission, and he’s continued to feel better without a single major flare-up.

David Rubin, MD David Rubin, MD

Then in 2009, Strong noticed that his 12-year-old daughter Victoria began falling asleep at odd times during the day. She complained of stomach pains and kept going to the bathroom. Strong knew exactly what his daughter was going through and an appointment at the Medical Center confirmed his fear. Victoria had Crohn’s disease. Strong knew that the disease could be hereditary. He felt responsible.

Still, genetics don’t yet explain a majority of Crohn’s cases. "There have been more genetic discoveries in inflammatory bowel diseases than in most other human diseases," Rubin said. "But it’s a more complicated than just the genetic disposition." Even in the case of identical twins, Rubin explained, if one twin has Crohn’s disease, the likelihood that the other has it is less than 50 percent. This demonstrates the importance of other factors in the environment that combine with the genetic susceptibility which lead to Crohn’s disease.

Barbara Kirschner, MD Barbara Kirschner, MD

Despite her diagnosis, Victoria remains positive and has improved through her treatment by Barbara Kirschner, MD, professor of pediatrics and medicine. Victoria plans to eventually go to medical school with an ambitious objective. "I want to find a cure for Crohn’s," she said.

The Strong family is committed to supporting the cause. From 2008 to 2010, Strong volunteered in a clinical trial involving a new stem cell treatment for Crohn’s, the results of which will be published in 2011. The Strongs also attend support groups and take part in research studies with other affected families.

"We want to help other families," Strong said. "You can’t sit back and think that you’re going to be disabled, because then that’s exactly what will happen. My daughter and I are not going to let this keep us down."

August 2010