Bonnie and Steve Johnston are like many busy working parents. With four daughters, ages 11 to 15, they’re often in the carpool shuffle between two schools, dance lessons, soccer, field hockey and cheerleading.
Despite being diagnosed with ulcerative colitis at age 24, Bonnie, now 43 and a nurse at Barnes-Jewish Hospital, has never let health challenges slow her down. Instead, she and Steve decided to do something to pick up the pace of finding the causes and cures for ulcerative colitis and Crohn’s disease—they established a fund through The Foundation for Barnes-Jewish Hospital to support research in these areas.
Ulcerative colitis and Crohn’s disease are two of the most severe forms of inflammatory bowel disease (IBD). These diseases can cause debilitating symptoms that may require long-term medications and often major surgery. Symptoms, which flare periodically, range from mild to severe and may include chronic diarrhea, stomach pain, fever, fatigue, weight loss, joint pain, infections and rectal bleeding.
Knocked Down in the Prime of Life
“I was just 24 when I was diagnosed—not an age when you expect to be sick,” Bonnie says. “It was very shocking to spend six weeks in the hospital when you’re supposed to be in your prime. I went from an active runner to a person who couldn’t even make her bed. I lost 40 pounds in six weeks.”
“I promised I would do whatever it took and take whatever came my way if we could be blessed with healthy children.”
– Bonnie Johnston
When hospitalization and medication failed to improve her health, Bonnie required a total colectomy, a surgical procedure that brings the small intestine out through the abdominal wall, requiring a patient to wear a bag. Nine months later, Bonnie had surgery to create a continent pouch inside her abdomen, called a J pouch. Due to complications, she was transferred to Barnes-Jewish Hospital for treatment. There she met James Fleshman, MD, a colorectal surgeon, who would change the track of Bonnie’s life.
“On a day when I was worn out, Dr. Fleshman looked me in the eyes after surgery and assured me everything had gone well,” Bonnie says. “I knew then that he was committed to making me better, and I committed to working just as hard as he was. There are very few things I haven’t been able to do because of my disease; you just need to adjust as you go and be patient.”
Patients with inflammatory bowel disease are never completely free of the disease. Since 1993, Bonnie has had dozens of diagnostic and surgical procedures related to IBD.
“We’re so fortunate to have the resources and support of the doctors and nurses at Barnes-Jewish Hospital in our backyard.”
Finding Hope for Her Family Through Research
In honor of the commitment to patients by Dr. Fleshman and the Department of Colon/Rectal Surgery, the Johnstons set up a research fund for ulcerative colitis and Crohn’s disease.
“When Bonnie was diagnosed with IBD, she and I were newlyweds just starting our lives together,” Steve says. “When you see someone you love so sick, it’s very unsettling and stressful. The good news is we found the right doctors at the right hospital. The care we have received has been unbelievable. We’re so fortunate to have the resources and support of the doctors and nurses at Barnes-Jewish Hospital in our backyard. My parents taught me at a young age to give back to our community, and with this cause close to our hearts, this is where we decided to make a difference.”
The Johnston’s fund supports research conducted by Steven Hunt, MD, a Washington University colorectal surgeon at Barnes-Jewish Hospital. “We hope our support helps Dr. Hunt find causes and cures for these diseases,” Bonnie says. “The night before my colectomy, I promised I would do whatever it took and take whatever came my way if we could be blessed with healthy children. We now have four beautiful, healthy daughters. This fund helps me fulfill my promise for future patients.”
Dr. Hunt is collecting tissue and blood samples from patients with Crohn’s and ulcerative colitis. In seven years, he and his team have collected nearly 2,000 samples to study. “Few tissue banks have so many samples and none have the extensive clinical and health backgrounds associated with the patient samples,” he says. “The Johnston’s support allowed us to expand our efforts and accelerate the pace of research.”
Dr. Hunt and his colleagues study the genetic makeup of each sample. “More than 30 genes, inherited from parents, are associated with Crohn’s disease,” he explains. “But no single gene causes Crohn’s or ulcerative colitis; it’s a combination of genes and environment. Every day, we’re taking small steps in research that help us fill in pieces of the puzzle. The more pieces we fill in, the easier and faster it goes on our path to find causes and cures for Crohn’s and ulcerative colitis.”
He continues: “This research project has enormous scope. The amount of work we could do with patient populations and the tissue bank is limitless. We just need the funding to complete them.”
Bonnie now translates her personal experience with inflammatory bowel disease to caring for patients as a nurse on Barnes-Jewish Hospital’s specialized colorectal surgery floor. “When I turned 40, I was in the hospital again as a patient, alone with my thoughts,” she says. “I realized it was time to go for it and become a nurse, a career I considered 20 years earlier in college. Now I use experience-based empathy with patients because I know what it feels like to be sick. There is no better reward than caring for and educating patients.”
In fact, Bonnie says she almost appreciates having IBD. “It has taught me so much, piqued my interest in nursing, and it taught Steve, the girls and me the importance of family, friends and faith. Throughout the last several years, I always felt confident that I was receiving the best possible care and that even when things were difficult, I would be OK. I know that I have everything I need to get through whatever comes my way. I’m a stronger person because of this experience.”
Party with a Purpose
Bonnie recognizes the stresses her illness puts on her family. “The hardest part is that IBD is a very unpredictable disease, one where you have periods of wellness and then it knocks you off your feet. It’s frustrating for me, but more difficult on my family.”
To celebrate Bonnie getting through some major health issues this past year, the Johnstons’ four girls decided to have a party. But it was a “Party with a Purpose” to raise money for a cause. “We asked the kids what they wanted to raise money for and they said, ‘Your disease,’” Bonnie says.
The Johnston girls put their party in motion, complete with a DJ, and asked their friends to bring $10 to support research. “Everyone had fun, it raised awareness and we raised some money,” Steve says. “We hope that others see their example and realize we all have the ability to do a little, and together, make a big difference. We’re hoping others will give in honor of those suffering from ulcerative colitis and Crohn’s. This research will help patients not just in St. Louis, but everywhere.”
Please support IBD research by making a gift to the Bonnie and Steven Johnston Research Fund for Ulcerative Colitis and Crohn’s Disease (#7636) at The Foundation for Barnes-Jewish Hospital. Make a donation online, call 314-286-0600 or email GivingBarnesJewish@bjc.org.