Learning to live with Crohn’s disease

Learning to live with Crohn’s disease

Crohn’s disease, an inflammatory bowel condition that can target any area of the digestive tract, affects people of all ethnic groups and all ages, according to Fort Lee gastroenterologist Dr. Mitchell Spinnell.

But, he adds, "it’s more prevalent among Ashkenazi Jews and in this part of the country."

While the disease touches only some 75 people out of 100,000, Spinnell’s practice — Scherl, Chessler, Zingler, Spinnell, based in Fort Lee and affiliated with Englewood Hospital — is treating about 400 adults with this condition, he estimates.

Children with the condition are treated by pediatric gastroenterologists. The Crohn’s and Colitis Foundation of America says that about 10 percent of those who suffer from an inflammatory bowel disease are under the age of 18, and the condition has been identified in infants as young as 18 months.

Dr. Frank Sileo, a New Jersey psychologist and the executive director of the Center for Psychological Enhancement in Ridgewood, has written a story for children, teaching them about Crohn’s.

A board member of the New Jersey chapter of the Crohn’s and Colitis Foundation, Sileo — who works with children, adolescents, and adults coping with chronic illness — also suffers from Crohn’s.

In his book, "Toilet Paper Flowers," a young girl who suffers from Crohn’s disease explains to her friend what the condition is like and how she lives with it. Because she uses the bathroom so often, she says, she creates flowers using toilet paper.

The heroine says the flowers make her happy and give her hope. At the end of the book, in addition to a glossary and Web resources, Sileo provides instructions for making these flowers.

The author details the initial symptoms of the disease, ranging from pain to weight loss to a change in bowel movements. Still, the message of the book is one of hope, as the protagonist tells her friend: "I still love to play soccer, take ballet classes, and have friends over just like every other kid."

Spinnell confirms that while Crohn’s is not curable, when properly treated, the patient can enjoy a "full and normal life, with a normal life expectancy." However, if the disease is not properly diagnosed in children, it may affect their metabolism and hinder their normal physical development. It is therefore very important, he says, to follow up on any unusual symptoms that persist for more than a week or two.

Spinnell also points out that since Crohn’s disease has a clear genetic linkage, families in which it appears should be monitored regularly. The Crohn’s and Colitis Foundation of America reports that approximately ‘0 percent of patients have another family member with an inflammatory bowel disease.

Introducing his story, Sileo writes, "It is my hope that other children struggling with this disease will find validation of their feelings and learn more about the disease." In addition, he hopes that their siblings and friends may come to "experience empathy and compassion for those fighting this disease."

For more information about the book, visit www.healthpress.com. For information about Crohn’s disease, go to the Website of the Crohn’s and Colitis Foundation of America, www.ccfa.org.

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