These tips for children with Crohn’s disease are from a psychologist who not only helps kids with IBD, he actually has Crohn’s himself.
“The hardest but one of the most rewarding aspects of being a psychologist is working with chronically ill patients, especially children,” says registered psychologist Frank Sileo of Ridgewood, New Jersey. “I am always touched by their hope, perseverance and strength. They come to my office because of guilt – they blame themselves for having the disease. They are frustrated with their bodies. They feel different, inadequate, and embarrassed over frequent bathroom use. Some children feel confused because their disease may be overlooked because on the outside they look fine, but inside they feel lousy.”
To help kids cope with Inflammatory Bowel Disease, Frank wrote Toilet Paper Flowers: A Story for Children about Crohn’s Disease. It’s a story of a young girl who has Crohn’s disease, and her explanation to her friend about the disease. As a way of maintaining hope, she creates flowers out of toilet paper to raise awareness about Crohn’s disease and to remind herself to stay healthy. The book is intended for children as young as six, but it is also written for parents, siblings, and friends of Crohn’s sufferers.
Here’s what Frank says about helping kids with Crohn’s, and living with the disease himself.
How Frank Copes With Crohn’s Disease
In 1990, I was diagnosed with Crohn’s disease. I’m currently in remission, and I manage it every day with exercise, healthy eating and a realistic attitude toward the disease. I also have a wonderful support system of family and friends.
Anyone struggling with a chronic illness knows of the endless medical tests, waiting in doctor’s offices, scheduling appointments, and hearing medical terms you never heard before. It can be overwhelming - and in addition to coping with a chronic illness, there is the balancing act of family, friends, and work demands.
I wish I knew about the resources out there for people with Crohn’s. Since my diagnosis, I have become very active in my local chapter of the Crohn’s Colitis Foundation of America. I think getting knowledge and support from local chapters of any disease is so helpful and important.
For tips on getting and keeping Inflammatory Bowel Disease in remission, read 4 Ways to Stop Ulcerative Colitis From Flaring.
Crohn’s Disease in Children – Dr Frank’s Tips for Kids With IBD
My best advice is to gain as much knowledge as you can about Crohn’s disease in kids. Build support systems. Know there will be good and bad days. I teach my young patients about self-care (healthy eating and sleep, exercise, psychological counseling and stress management). This is of paramount importance, because they often feel helpless.
I also encourage children with Crohn’s to become an ACTIVE member of their treatment team and not be a passive partner. Everyone who comes to my office for therapy must develop a stress management plan and implement it.
How Kids With Crohn’s Disease Often Feel
Children report feeling alienated and isolated, and as a result may experience depression, anxiety, and school problems such as bullying. My job is to help them build on their strengths and to develop a more healthy view of themselves.
My young patients with Crohn’s disease may be trying to cope with teasing by peers, pressures in situations involving food and eating, listening to ignorant statements such as “You’re so thin. Put a little meat on your bones”; “It’s all in your head, you’re just stressed out”; and my personal favorite “Gosh I wish I had Crohn’s disease, then maybe I could lose some weight.”
I try to teach my patients with a chronic illness to have a “realistic attitude” or “fighting attitude” toward the disease. The fighting attitude teaches that there will be both good and bad days of living with their illness and to find out as much information they can and to become an active member of the healing process.
Because I want to help kids cope with Inflammatory Bowel Disease – and as a result of my own experience with Crohn’s disease – I wrote the first and only children’s books on Crohn’s disease and lactose intolerance. Toilet Paper Flowers: A Story for Children about Crohn’s Disease was mentioned at the top of this article, and my book for lactose intolerance is Hold the Cheese Please! A Story for Children About Lactose Intolerance. I am very proud of these books.
Are you coping with Crohn’s disease, or another type of IBD? You’re not alone! Read Ulcerative Colitis – How Laurie Survives Inflammatory Bowel Disease.
If you have any thoughts or questions on children with Crohn’s disease, please comment below.