Talking about inflammatory bowel disease is tough.
Living with the chronic, painful and unpredictable condition of the digestive system is even tougher.
Kitchener's Liz Elliott suffered with the illness for decades before she had drastic surgery to remove the diseased part of her large bowel.
"Half of my life I spent trying to struggle with inflammatory bowel disease," said the 56-year-old. "After surgery it was like I had to learn how to be healthy again."
Elliott was finishing her first year of university when she first started having trouble.
She was overwhelmed with flu-like symptoms -- vomiting, nausea, abdominal cramping and diarrhea -- but she chalked it up to exam stress.
But the symptoms lingered for weeks, then began worsening and Elliott's weight dropped.
She was admitted to hospital with a high fever and a gastrointestinal specialist diagnosed her with inflammatory bowel disease -- a condition Elliott and her family had never heard of before.
"Once the diagnosis was made, that kind of scared me," Elliott said.
She heard only two things the doctor told her: there is no known cause and no cure.
"I was terrified that I was going to die."
There are two types of inflammatory bowel disease: Crohn's disease which can affect any part of the gastrointestinal tract, and ulcerative colitis which is in the large bowel.
Elliott was diagnosed with Crohn's colitis, which is Crohn's disease in her large bowel.
Immediately she was put on heavy doses of steroids and anti-inflammatories.
"I had been really healthy up until then," Elliott said.
That changed with Elliott's diagnosis. Suddenly socializing was tough for the teenager, and she felt different from everyone else her age.
"You can't eat the same things as your peers and I was always looking for washrooms," said Elliott, who later trained as a nurse and now works as a clinical manager.
For many years, Elliott did her best to cope with the disease. Medication helped, along with a careful diet to avoid foods that aggravated the condition.
She was careful about doing too much because that could cause symptoms to flare up.
And people weren't always understanding or sympathetic. Some thought the problem was in her head, and Elliott had to explain the disease wasn't imagined.
"On the outside the person looks normal, but on the inside the pain is real," Elliott said.
Tired of the chronic illness, Elliott decided to have surgery about 14 years ago to take out her entire large colon.
Such an extensive surgery is uncommon for the condition, but only removing a bit may have worsened things for her.
"They removed it all, so the symptoms are gone," she said.
Elliott does have to always wear an ileostomy bag, which collects waste material from the small intestine.
But she has gained so much -- both health and freedom.
Suddenly she was able to eat what she liked, go out without worrying about accidents, travel and enjoy being active. Even something as simple as taking her two dogs for a long walk was no longer impossible.
And now she has the energy to volunteer with the Crohn's and Colitis Foundation of Canada, helping to raise money for research to find a cure for the debilitating disease.