Eighteen months after Christopher and Julie Dobry had their son Jared, they noticed something was not right. He was experiencing intense stomach discomfort and digestive issues that seemed to only worsen over time. For years afterward, they traveled from doctor to doctor trying to find the right diagnosis.
Nearly a decade later, in 2009, the Dobrys entered Children’s National Health System and found the diagnosis they had been desperately seeking for Jared. After an endoscopy and colonoscopy, doctors found that Jared was suffering from Crohn’s Disease.
Crohn’s disease is an incurable chronic inflammatory bowel disease that affects the lining of the digestive tract, causing severe abdominal pain, diarrhea, weight loss, anemia, and fatigue. It can also lead to life-threatening conditions such as an increased risk for colorectal cancer.
Though Jared’s family was relieved to know what had been ailing him for so many years, the long process of determining treatment and learning to live with the chronic disease was their next challenge.
Jared experienced bouts of wellness in between Crohn’s outbreaks, but between ages 9-12, Jared was constantly sick, in and out of emergency rooms. He was underweight and had stopped growing, so gastroenterologist Parvathi Mohan, M.D., at Children’s National placed a feeding tube to help Jared gain weight and reach puberty at the normal age. IBD Clinical Coordinator and nurse, Molly Alston also stepped in to provide treatment.
Jared’s treatment began with oral medications, steroids and a feeding tube all at once. His condition improved and he began to experience remission, going to Children’s regularly for check-ups. With his mother’s help, Jared elected to place his own feeding tube every morning and night. The nurses were in disbelief watching Jared, at only twelve years old, remove and insert his tube instead of leaving it in around the clock.
As of December 2013, Jared began getting methotrexate shots with gastroenterologist Laurie Conklin and Director of the Inflammatory Bowel Disease Program at Children’s National, and later, intravenous Remicade infusions every eight to ten weeks. “That type of medication [Remicade] is usually given to children who have a more serious version of the disease or have failed other medications,” said Dr. Conklin. Since then, Jared has truly jumpstarted the process of staying well and managing Crohn’s.
“It has been wonderful,” says Jared’s mother, Julie, about her experience at Children’s. “Every time we stayed there, the nurses, the staff, everyone has just been wonderful with everything. I feel like it’s been a lifesaver for Jared.”
Jared is now 18 and currently in his first year of college at the University of Maryland; he still has to take off a few days of classes every six weeks to receive Remicade treatments. “Jared improved on Remicade,” said Nurse Alston. “He was able to stay in his college classes. The feeling of fatigue on top of regular teenage college fatigue is a whole extra battle. He’s able to function as a normal 18-year-old teenager.”
Crohn's disease is typically treated with medications such as steroids and immunosuppressants to slow the progression of the disease. Some people can be symptom free most of their lives, while others, like Jared, can have severe chronic symptoms that never go away.
“We try to keep people out of pain, but they do have symptoms as they get closer to their next dosage,” said Dr. Conklin. “Sometimes things like stress and nutrition can impact the symptoms. College is a tough time for that. There is no diet that is effective for treating Crohn’s. It’s more about adjusting your diet to minimize symptoms.”
The quality of care they received directly impacted Jared and his family’s experience learning about Crohn’s. Nurse Alston ensured that Jared received the best care during his visits and that his family understood exactly what to do for his treatments. “She is just awesome,” Julie told Children’s. “If I send her an e-mail, she replies same day, sometimes within the hour. She explains everything, and she is very patient with all my questions.”
Since entering college, Jared started an intramural soccer team and joined the fencing club. He also holds a part time job at a convenience store and recently took a ballroom dancing class with his girlfriend. “It seems like he has the desire to be an advocate for a disease that talks about poop and blood. It’s nice to see an 18-year-old boy who wants to spread awareness and talk about it,” said Dr. Conklin.
When it comes to Crohn’s, the Dobrys feel that there’s a misconception about the disease and its symptoms. Many people assume that people with Crohn’s suffer from only frequent diarrhea, but in actuality, Crohn’s is a systemic and arbitrary disease, affecting eyes, skin, and other organs.
“It’s like having the worst flu you’ve ever had in your life, and any time it wants to attack you, it can--for as many days as it wants,” said Julie. Misunderstanding Crohn’s can prevent important conversations from happening, often due to embarrassment or ignorance. Families like the Dobrys are hoping to change that portrayal through Jared’s story.
“He absolutely has flourished,” Julie said about Jared’s transition into college. “All my fears about him going there have gone; he’s just done extraordinarily well. It’s been a really good experience.” Jared makes time to mentor and encourage younger patients living with Crohn’s. After attending as a camper for six years, Jared has applied to be a camp counselor at Camp Oasis, a summer camp in West Virginia sponsored by the Crohn’s and Colitis Foundation of America for kids living with inflammatory bowel disease. Dr. Conklin serves as a medical director for the camp.
“As an older patient, Jared has been very quick to be encouraging to other younger patients,” said Nurse Alston. “There was a little girl who was nervous about her IV placement for Remicade and he was encouraging her, telling her how brave she was and that he was scared too.”
Jared is still determining where to apply his physics background, but wants to apply for an internship on the local naval base for the summer.