Local family takes big steps to raise Crohn's awareness

ABOUT CROHN’S

The gastrointestinal tract normally contains harmless bacteria, many of which aid in digestion. The immune system usually attacks and kills foreign invaders, such as bacteria, viruses, fungi and other microorganisms. Under normal circumstances, the harmless bacteria in the intestines are protected from such an attack. In people with an inflammatory bowel disease, these bacteria are mistaken for harmful invaders, and the immune system mounts a response. Cells travel out of the blood to the intestines and produce inflammation (a normal immune system response). However, the inflammation does not subside, leading to chronic inflammation, ulceration, thickening of the intestinal wall, and eventually causing patient symptoms.

While symptoms vary from patient to patient and some may be more common than others, the telltale symptoms of Crohn’s disease include persistent diarrhea, urgent need to move bowels and abdominal cramps and pain.

Crohn’s is a chronic disease, so this means patients will likely experience periods when the disease flares up and causes symptoms, followed by periods of remission when patients may not notices symptoms at all.

In more severe cases, Crohn’s can lead to tears (fissures) in the lining of the anus, which may cause pain and bleeding, especially during bowel movements.

The causes of Crohn’s are not well understood.

Crohn’s tends to run in families, so if you or a close relative has the disease, your family members have a significantly increased chance of developing Crohn’s.

Source: Crohn’s & Colitis Foundation of America

Jack Spandorfer’s early symptoms of Crohn’s disease were subtle — a loss of appetite, low energy, tiredness.

His dad, Dr. Pip Spandorfer, a local pediatrician, didn’t identify the illness back in 2010. When Jack stopped playing soccer and participating in school plays and instead headed straight to the couch after school, Spandorfer thought maybe his son was just being lazy.

Crohn’s disease, an inflammatory bowel disease (IBD) that causes inflammation, or swelling, across the lining of the digestive tract, is one of those difficult-to-diagnose illnesses because symptoms come and go, and the symptoms can mimic other conditions such as celiac disease or food allergies. As time went on, Jack, now 14, developed additional symptoms, including stomach pain, and suddenly lost 10 pounds, prompting the Spandorfers to embark on what would become a complicated process of getting a diagnosis.

“After Jack was diagnosed, we were sitting around talking about feeling empty and sad and like we had no one to talk to who was going through what we were going through,” said Pip Spandorfer, who lives in east Cobb. “And for children with Crohn’s, they often don’t know another child with Crohn’s. There is likely not another kid at their school with Crohn’s. … We realized we couldn’t stand on the sidelines. We had to do something.”

A year after Jack was diagnosed with Crohn's in November 2011, Spandorfer and his wife, Ellen, a child psychologist, contacted the Georgia Chapter of the Crohn's and Colitis Foundation of America (CCFA) to start a local support group to create a space for families to discuss symptoms, medications, side effects, cutting-edge studies, pain management, nutrition and other issues.

The group now meets several times a year at Children's Healthcare of Atlanta at Scottish Rite. For more information about this and other Crohn's support groups locally, go to www.ccfa.org/living-with-crohns-colitis/find-a-support-group/.

Parents gather in one room, and children, divided by age groups, meet separately. Not only are Pip and Ellen leading the way in helping families grapple with Crohn’s, but Jack is also taking charge of his illness and helping others. Jack will be this year’s “Honored Hero” at the CCFA’s seventh annual walk in Georgia.

“Jack is an inspiration because he talks about his disease very openly and honestly, where we find many patients withdraw from talking about it,” said Shannon Primm, assistant national walk manager of the CCFA/Georgia Chapter. “He has the understanding that being open and honest helps us spread awareness and sets an example for other patients — so that they have the same hope and confidence he does.”

Approximately 1.6 million Americans suffer from IBD (Crohn’s disease and ulcerative colitis), which can cause debilitating pain, severe diarrhea and bowel obstructions. There is no cure but medications are available to help control chronic inflammation. Jack has a moderate to severe case and has still not yet achieved full remission. A year ago, Jack switched to the medicine Humira, and he receives weekly injections, providing him with some relief from the disease.

Three years after Jack was diagnosed, younger sister Carly was also diagnosed with Crohn’s. Her case is considered more mild. Both children are able to participate in activities they enjoy: Carly, now 12, is a competitive cheerleader; Jack is back to playing soccer.

The support group is a place for parents to get practical advice on how to talk to their child’s teacher to make sure the teacher not only realizes people with Crohn’s often experience an urgent need to use the bathroom, but also to help the teacher and child work out a system to avoid drawing attention to the student’s frequent bathroom breaks.

It’s a place where parents can openly discuss their fears: Will my child need to have surgery (or more surgeries)? How much will Crohn’s delay development? Will my child be able to someday study abroad?

But above everything, it’s a place of hope:

“It is really difficult in the beginning when a child is first diagnosed with Crohn’s or another medical illness, but soon after the child starts to feel better physically and emotionally, everyone will find themselves in a better place and kids and parents will be happy again,” said Ellen Spandorfer. “There might be some rough times and bumps in the road, but stay positive, kids are resilient.