Opinion | You don’t have to be staggered by Crohn’s diagnosis – TheSpec.com

When she was nine years old, Emma Haist started having bad cramps and losing weight. She would come home from school and lie on the couch, sleeping through dinner until the next morning.

At first, her family doctor thought she might be allergic to dairy or glucose. But after she was sent to the Centre for Child and Youth Digestive Health at McMaster Childrens Hospital, Emma was diagnosed with Crohns disease.

Along with ulcerative colitis, Crohns disease is an inflammatory bowel disease (IBD), which disrupts the bodys ability to digest food, absorb nutrition and eliminate waste in a healthy manner. Ulcerative colitis is inflammation of the colon and causes stomach pain, bloody diarrhea and weight loss. With Crohns disease, inflammation can occur anywhere in the digestive system and can cause abdominal pain, diarrhea, appetite loss, fevers or joint pain.

The exact cause of IBD remains unknown and there is no cure.

After her diagnosis, Emma was admitted to hospital. On her 10th birthday, she had a nasogastric tube inserted to provide her with broken down nutrients and vitamins and give her gastrointestinal system time to heal.

We found out I had Crohns and then within an hour, they put an NG tube down my nose and into my stomach, says Emma, who is now 16. As a 10-year-old going back to school with a tube, you look different. I have to now explain to my friends what it is and I dont even know myself. My friends were really accepting, but the NG tube process is really difficult, because I had no food for six weeks, which was one of the hardest things Ive have ever had to do.

Emmas mom, Marlene, says she and her husband, Roger did not know much about the disease.

Our child was suffering and in pain and we didnt know where to turn or how to fix it. So it was very emotional, very hard for us in the beginning, she said. The team at McMaster was great, answering questions and guiding us. Then it was trial and error in terms of medication and what foods to avoid. It was a battle in the beginning.

Its a battle more families are fighting every year. According to Crohns and Colitis Canada, the prevalence of Crohns and colitis in Canadian children under 18 has risen more than 50 per cent in the last 10 years and the incidence of Crohns disease in kids under age 10 has doubled since 1995.

From my perspective, this is pretty alarming. And were seeing a very aggressive form of disease, in that it is presenting in children under 10. And the basic rule is the younger the child, the more aggressive the disease, says Dr. Bob Issenman, a professor of pediatrics at McMaster University. Im beginning to hate this disease. As hard as we work, the more patients we see, and the sicker they seem.

There is good news though, says Issenman, as a new class of treatments are very effective in managing IBD. Biologic therapies stop certain proteins in the body from causing inflammation. Unlike older treatments, which affect the whole body and can cause harsh side effects, biologics are more precisely targeted to factors responsible for IBD. These medications are given either as injections or intravenously.

This is a lifelong struggle. But were optimistic about the future, because at any given time, 90 per cent of our patients are perfectly healthy and they are active, engaged, accomplished. Theyre involved in all the usual activities, Issenman said.

The second busiest childrens hospital in the province, McMaster serves patients from Niagara Falls to Oakville and Hamilton to Orangeville. Nurse practitioner Emily Brackenridge co-ordinates the care for about 320 patients a year.

I would want patients to know diagnosis is usually the worst part. It is anxiety provoking. It affects you mentally and physically. There is also a lot of information being thrown at you. Its really overwhelming and stressful, she says. But after that, patients usually do very well. Theyre playing hockey, hanging out with friends, going to university. The diagnosis is really hard. But there is hope after that and thats an important thing for people to know.

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Today, Emma is a Grade 11 student at Welland Centennial Secondary School. She loves science, plays soccer, works at a local grocery store and hangs out with her friends. She has also raised more $25,000 in the past five years for the annual Crohns and Colitis Canada Gutsy Walk and has been its regional honorary chair twice. This year, she applied and was chosen to be the national chair. After trying a few medications, Emma found a biologic that works for her and has been in remission for about five years.

Once you find the proper medication and know your food triggers to avoid, it gets 10 times easier and it doesnt affect your life as much, she says. No matter how tough it is at the beginning, it does get better.

Abigail Cukier is a freelance writer in Hamilton. She most often writes about health, science and business topics.

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Opinion | You don't have to be staggered by Crohn's diagnosis - TheSpec.com