Life with IBD

Oliver’s Story

When you meet him, Oliver reels you in with his charm. He has an easy smile, boundless energy and an air of self-awareness more common in people three times his age. In other ways he’s still a teenager — interested in music, hanging out at 7-11 with his buddies and flipping his long bangs repeatedly.

It’s his worldly perspective that’s intriguing. How many 13 year olds have the insight to declare, “Life is too precious to sit around playing video games when you can do so much more and spend time with your family?”

This mature outlook has been hard won. Diagnosed with Tourette’s Syndrome at age five, a mild form of epilepsy when he was seven and Crohn’s disease at 10, Oliver has learned to cope with adversity through a philosophical approach to life and relationships.

Now a healthy teenager and embracing everything Grade 8 has to offer, including playing on the rugby team, joining the school improv club and embarking on his first job at the local barber shop, it’s hard to believe that only a year ago Oliver had wasted to just 69 pounds. He was also severely dehydrated, his blood levels were critical and, in his words, Oliver was “so pale that if you took a sheet of paper and put it next to my picture you could not tell the difference.”

His mom, Debbie, says that Oliver’s Crohn’s disease had come on so gradually that at first his family didn’t realize how sick he was getting. It didn’t help that Oliver has a high tolerance for discomfort. He explains, “I think my body just kind of copes. I just push through things and continue on.”

I was getting these massive cramps to where I was in a fetal position in agonizing pain. It’s like your body is turning itself inside out and all you can do is wait until it passes. I wouldn’t wish that pain on anyone. It’s like torture.

However, there came a point where there was no more pushing through. “I was getting these massive cramps to where I was in a fetal position in agonizing pain. It’s like your body is turning itself inside out and all you can do is wait until it passes. I wouldn’t wish that pain on anyone. It’s like torture.”

Oliver was admitted to BC Children’s Hospital, where he stayed for a month while doctors determined that not only was his Crohn’s flaring, but he had contracted a C-difficile infection.

At the same time, Oliver’s grandfather, “Opa,” was sick with cancer. His mom was in crisis mode, pulled in two directions by the illnesses of her father and son. Opa passed away just a few days before Oliver was admitted to hospital. He was granted a half-day pass to attend the funeral.

The stay in hospital was not easy for Oliver. He experienced panic attacks and the C-difficile complicated doctors’ efforts to find an effective treatment for his Crohn’s. Nevertheless, Oliver was desperate to be discharged. An aspiring actor, he had landed the role of Winthrop Paroo in a professional production of “The Music Man” at Richmond’s Gateway Theatre. This was October, and rehearsals were set to begin in November.

It’s easy to get the impression that with Oliver, where there’s a will, there’s a way. He was released from hospital in time to start rehearsals, but only after doctors put him on prednisone, described by Oliver as “a nasty drug” that made his face swell. “I looked like a balloon.” While the prednisone helped reduce his Crohn’s symptoms and finally gave him back his appetite, in many ways it made Oliver’s life worse. Kids at school taunted him because of his looks. He says, “I was winking a lot because of my Tourette’s and I now had a big face. Kids were calling me,‘fat face’ and ‘twitchy eye.’ So not only was I going through all these bad things with my Crohn’s, but I was being bullied at school.”

A few loyal friends plus his role in the play were the saving graces during this challenging time. Oliver relied on pre-performance natural rushes of adrenaline and the encouragement of his supportive co-actors to make it through all 26 performances of the Music Man.

After Christmas he went back to school, and his doctors found a biologic, Humira, that, in conjunction with an immunosuppressant, Imurin, is working suppress his Crohn’s.

However, Humira is not without its challenges. It comes in the form of an injection with an additive that causes a searing burning sensation for about 10 seconds. Oliver dreads the bi-weekly shot: “It hurts so much, and every time it takes me back to the time in the hospital and the cramps and the pain. It’s really hard.”

Oliver would also be the first to tell you it’s worth it. He’s healthy, strong and even travelled in Europe with his mom this summer.

I’m a strong person, and I dealt with a lot. At points I wondered how much more I could take. But one thing I discovered out of this really, really bad time is that there are a lot of good people out there who want to help.

Debbie is overwhelmed by happiness when she sees her son able to travel and play. “I have never had so much joy in my life, seeing him so healthy, because it was so awful.” She pauses, emotional at the thought of what her family’s been through. “I’m a strong person, and I dealt with a lot. At points I wondered how much more I could take. But one thing I discovered out of this really, really bad time is that there are a lot of good people out there who want to help.”

Oliver is happy to share his story publicly, “I’m an open person,” he acknowledges, noting that most people are happy with the simple explanation that Crohn’s is a disease “where your intestines are kind of messed up.” He adds, “After you say intestines, most people don’t want more details.”

When Oliver was very ill, Debbie says she was grasping for answers and turned to the Internet where she “found only the horror stories.” She wanted to share her family’s journey to give hope to other parents of children with inflammatory bowel disease. She acknowledges, “It is horrific and traumatic, but there is still life and there is still joy.”

Our goal is to be open and providing much-needed IBD patient care by the end of 2018. For more information, please send an email to info@ibdcentrebc.ca