Crohn’s Disease: David’s Story

When David was a young child, he often had stomach aches and digestive problems. He also wasn’t growing at the expected rate. The issues continued into his mid-teens, and the stomach aches grew worse. David’s pediatrician believed that kidney stones or gall stones were the cause of his problems.

One day, David was in so much pain that his parents took him to the emergency room at their local community hospital in Bucks County. Doctors thought he had a ruptured appendix and rushed him into surgery. But when they opened him up, they found that his appendix was healthy.

Finding a diagnosis

Given his symptoms, the doctors suspected that he had Crohn’s disease, a form of inflammatory bowel disease (IBD).

Because David was so sick and in pain, his parents, Nancy and Jeffrey Fine, asked the doctors at the community hospital to give him a few days to recover before sharing the news. They were shocked and upset when the GI doctor came into David’s room the same day and bluntly gave him the diagnosis.

“I still remember the way the doctor said it,” says Nancy: “’David, I’m very sorry to tell you that you have Crohn’s disease. It’s a very bad disease and I don’t have much to offer. Good luck.’”

David was released on an anti-inflammatory medicine with a minimal care plan and no other treatment options. He was devastated and left the hospital thinking that the disease would define his life.

“We’re in this together.”

David’s parents refused to give up hope. They researched Crohn’s disease and learned about the industry-leading work of Robert Baldassano, MD, the Director of the Center for Pediatric Inflammatory Bowel Disease (IBD Center) at CHOP. The Fines immediately made an appointment with Dr. Baldassano. That visit was a turning point for David, replacing his despair with hope.

“The contrast was like night and day,” remembers Jeffrey. “At CHOP, everything was about hope – the way the research was advancing, the ways they could treat the symptoms, and the progress being made toward finding a cure.”

“When we went to chop, they welcomed us with open arms. they told us what they could do, not what they couldn't do. dr. Baldassano told David, 'we're in this together.' ”

David left CHOP that day knowing the disease wouldn’t define his life. He had confidence that the specialists at CHOP would find ways to help him manage the symptoms so he could move forward.

Managing symptoms

Crohn’s disease does not yet have a definitive cure, but symptoms can be managed. Crohn’s affects patients in various ways, and it can take time to discover the best treatment for each individual patient. Dr. Baldassano’s goal was to find the most effective way to manage David’s debilitating stomach pains and impaired digestion.

Dr. Baldassano prescribed a combination of immunosuppressant and anti-inflammatory drugs to minimize the inflammation in David’s lower intestine. Dr. Baldassano also recommended a carefully managed diet to eliminate foods that would cause further irritation.

Doctors also discovered that the lower section of David’s small intestine, the terminal ileum, had been damaged by the inflammation. Scarring had narrowed a foot-long section to the size of a drinking straw. Dr. Baldassano explained that surgery could correct this narrowing (stricture), but he recommended putting that off, as advances were being made in the techniques for performing the operation.

Throughout high school, David managed the disease with medication and a very strict diet. In fact, he was able to play varsity tennis. Despite having his physical symptoms under control, David initially had difficulty sharing his emotions about coping with Crohn’s disease.

“The toughest part – I was in denial that anything was wrong with me,” recalls David. “I didn’t want to accept that I had a disease.” David didn’t tell his friends that he had a problem, and did his best to hide it.

David’s breakthrough surgery

When David started college, his restricted diet became too difficult to manage. Away from home, he didn’t have the time or the facilities to prepare the kinds of food he needed. Over winter break, he returned to CHOP for surgery to remove the damaged portion of his terminal ileum. He was one of the first patients anywhere to have that procedure done laparoscopically, meaning with just a small incision at the spot where he already had a scar from his appendix operation.

David experienced an immediate improvement with the surgery. He still needed to be careful about his diet, but he didn’t have to be nearly as restrictive as before. “The first thing after surgery – I went straight to Wawa for a hoagie,” he remembers.

When his digestive system began working more effectively, David’s growth resumed. His bone density had been impacted, requiring physical and nutrition therapy to strengthen his bone structure and promote his growth. David was soon back to the activities he loved, like tennis and playing the drums.

After graduating from Northwestern University, David became a teacher. Today, he teaches middle school in the New York City public school system, where he is also Dean of students.

David’s job is demanding – he typically works 11-hour days, balancing a teaching load with responsibility for discipline issues at the school. “I’m very conscious of my energy level,” he says. A key element in that is his diet. He has found that his stamina is highest with a menu of fresh, unprocessed food.

As an adult, David sees a gastroenterologist in New York, but he still keeps in touch with Dr. Baldassano, who shares information with him on research developments in the field.

Supporting research toward a cure for IBD

When David was diagnosed with Crohn’s Disease, his parents were affected too. "There's nothing a parent won't do when they have a child with an incurable disease," says Nancy. “We told David that someday there would be a cure, and that Jeffrey and I would do everything to help make that possible."

It's a promise they have kept.

The Fines co-chair the IBD Family Research Council (FRC), which supports research at CHOP’s IBD Center. Each year, the incidence of IBD increases, and today it is one of the most significant chronic diseases affecting children. The FRC, a volunteer organization of families, raises research dollars to help the IBD Center find better treatments and, ultimately, a cure.

Formed in 2006, the FRC has raised close to $2 million for IBD research at CHOP. One of the Council’s key fundraising events is the annual Walk for Hope, held each spring. This year, the 8^th Annual Walk for Hope will take place on April 23, 2017, at the Navy Yard in Philadelphia.

“We are persistent. we need to do this for our kids. nearly every dollar that we raise goes directly to research at chop's ibd center.”

Both Nancy and Jeffrey are tremendously impressed with the medical team at the IBD Center. “Every doctor there is so brilliant, incredibly dedicated, and driven” says Jeffrey. “Dr. Baldassano has said that he goes to work every single day feeling an urgency to find better treatments and to ultimately find cures. We saw that in their care for David, and we see that in the advances they are making in their research.”

The funds raised by the IBD Family Research Council are well invested. The IBD Center at CHOP is the largest facility in the United States dedicated to the treatment and study of IBD in a pediatric population, more than twice the size of the next leading center. By a vast margin, the IBD Center receives more referrals and publishes more studies than any other comparable program in the world.

Research at the IBD Center has already led to significant improvements in treatment, including medications, diet, nutrition and unique approaches for specific types of IBD based on symptoms and genetic markers.

"We were just so lucky that the number one, cutting-edge pediatric IBD research and treatment center happened to be in our backyard," says Nancy. "Jeffrey and I really believe that one day the cure will come, and when it does, it will come from Children's Hospital of Philadelphia. That's what drives us."