Tomas Guinan was diagnosed with Crohn’s about 10 years ago. He was suffering from stomach cramps every day and couldn’t go far from a bathroom.
He tried several drugs that didn’t help and took prednisone, which masked the symptoms, for eight years. Because prednisone can weaken bones he also had to take bone builders and calcium.
“There were a lot of things I couldn’t do because I always had to think about whether I’d be close to a bathroom,” he said. “I had a very restricted diet of bland foods because a lot of the things people consider healthy, like fruit and fibre, can irritate Crohn’s.”
The condition can also be triggered by stress, so he sometimes ended up ill when it came time to write university exams.
In December 2011 he experienced a severe flare up and lost weight quickly, dropping to 145 pounds on his 6-ft. 1-in. frame. He was hospitalized and tube fed. A colectomy – surgery to remove all or part of the colon – was recommended.
“I was starting to feel a little better and I didn’t feel I needed that yet,” he recalled. “There was an opening for the surgery and they pushed pretty hard for it, even having me talk to a psychologist about why I didn’t want it.”
Guinan had gone through four drug trials, in Truro and Halifax, that didn’t help him but he was hopeful when his mother told him of a trial she read about online.
Current treatments suppress the immune system but Qu Biologics, under the direction of Dr. Brian Bressler, was testing site specific Immunomodulators (SSIs) designed to restore a normal immune response.
He applied for a spot in a trial, which had very specific criteria and was only open to a few people.
“It was really exciting to be accepted,” he said. “I was hopeful about this treatment.”
He went to Vancouver, where the trials were run, for nine days in April 2014. He learned things like how to inject the drug in the stomach.
Half of the participants were to be given a placebo for the first two months and Guinan believes that was what he had, as he noticed no change in his health during that period. Everyone taking part in the trial was guaranteed a chance to try the drug after two months.
“I was feeling better almost immediately when I got the drug,” he said. “Between June and August I put on about 20 pounds and I felt healthy.
“It took a while to get used to feeling better and not having to think about where the bathroom was everywhere I went. This summer I was able to go hiking and camping.
Guinan still has an intestinal stricture – a narrow section – caused by Crohn’s scar tissue but is thrilled with his health compared to what he had experienced for years.
“The success rate with this drug is high so I would love to see it become the new standard treatment,” he added.
“I never wanted to give up on finding something that would help me so I would encourage other people not to be defeated. There’s always hope.”
Quick Facts
– Inflammatory bowel diseases show up most often in developed countries, urban areas and temperate climates.
– The rate of Crohn’s has almost doubled in children under the age of 10 since 1995.
– Males and females are equally affected.
– Crohn’s and colitis can affect any race or ethnic group but people of European descent have the highest rates.
