August 20, 2020
Typically, we photograph every patient appearing in HealthU. Because this story was planned during the surge of COVID-19, that contact would have been too risky. Instead, our team took a creative approach and replaced photo shoots with illustrated portraits of patients.
Tummy troubles are difficult to talk about—especially for kids, who typically have one of only two reactions to all things gastrointestinal: humor or shame. When there’s blood involved, however, digestive distress is neither funny nor embarrassing; it’s frightening.
No one knows that better than Dolores Koch and her 13-year-old daughter, Mary, of Dumont, New Jersey. When Mary was just 8 years old, she and Dolores were at a mother-daughter Girl Scouts event when Mary had an accident. They subsequently went to their pediatrician, who attributed Mary’s symptoms—diarrhea and bloody stool—to a gastrointestinal (GI) virus that was circulating in their community. It quickly became apparent, however, that Mary had something much more serious than a fleeting stomach bug.
“After just three and a half weeks, her weight dropped to 47 pounds, which was less than the 5th percentile on the growth chart for weight,” Dolores recalls. “She was eating three meals every single night—she’d eat, then she’d be on the toilet, she’d eat again and then she’d be on the toilet again—and the weight was just falling off. She wasn’t sleeping. She couldn’t shower. She had no energy. She could barely even stand. It was really scary.”
An ‘Aha’ Moment
Mary’s pediatrician had an aha moment a few weeks into treating her when he attended a seminar on inflammatory bowel disease by pediatric gastroenterologist Elaine Moustafellos, M.D. He subsequently referred Mary and Dolores to Dr. Moustafellos’ practice at Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center, where Mary became the patient of Co-chief of Pediatric Gastroenterology Wendy Jeshion, M.D.
“I met Mary five years ago when she presented with abdominal pain, rectal bleeding, diarrhea and weight loss. On physical examination, she was very ill-appearing and had anemia, as well as elevated markers of inflammation,” recalls Dr. Jeshion, who performed an endoscopy and colonoscopy that revealed severe inflammation throughout Mary’s colon. Ultimately, she diagnosed Mary with Crohn’s disease, a chronic condition that causes damage to the lining of the GI tract.
“We were told she has severe treatment-resistant pancolitis Crohn’s, which is the worst you could possibly imagine,” Dolores says. “We were told not to expect remission and that the best we could hope for was to make her condition more manageable. It was a hard pill to swallow.”
Over the course of four years, Dr. Jeshion prescribed numerous medications—at one point, Mary was taking more than 15 pills a day—most of which failed. Things got so bad that the Make-A-Wish Foundation granted Mary a wish: Mary’s favorite actor, Sean Giambrone, from the ABC sitcom “The Goldbergs,” visited her at home on her 10th birthday.
That was a high. Mostly, though, Mary’s young life had become a series of lows. “It was a very scary experience because I was always in pain and couldn’t break away from the bathroom,” says Mary, who at the height of her illness had to use the bathroom up to 16 times per day, which left her all but tethered to the toilet—so much that she stopped being social and received home education for the better part of three years.
Making Remission Possible
Mary’s illness finally turned a corner in spring 2016, a few months after she began taking Remicade, a biologic drug she receives via infusion 13 times a year. “Biologics are medicines that come from living organisms and are made via genetic engineering,” Dr. Jeshion says. “Remicade blocks a protein produced by the immune system, resulting in a decrease in inflammation in the GI tract.”
An endoscopy and colonoscopy in September 2019 revealed what Mary thought was impossible: She was in both endoscopic and histologic remission.
“That means her digestive tract looked entirely normal both to my eyes when I did the scope and in the lab when examining the biopsies, which is exactly what we hope to achieve when we prescribe medication,” Dr. Jeshion says.
Adds Dolores, “To find out something we never thought was attainable is attainable is such a huge relief. There were so many days that I questioned whether she would ever get better, but Dr. Jeshion and her team gave us hope, and I’m so grateful for that.”
So is Mary, who has since returned to school and friends.
“I went from being a sick, weak person to being a lot more outgoing,” she says. “I can do a lot more now than I used to be able to do. I feel like my normal self.”
Next Steps & Resources:
- Learn how we are dedicated to treating a full range of gastroenterological problems in children
- Meet our source: Wendy Jeshion, M.D.
- To make an appointment with Dr. Jeshion or a doctor near you, call 800-822-8905 or visit our website.
- How to calm your child’s nerves before surgery
- What to know if your child is prescribed steroids
The material provided through HealthU is intended to be used as general information only and should not replace the advice of your physician. Always consult your physician for individual care.