Timmins, ONJacob was diagnosed with ulcerative colitis three years after he stopped taking Accutane - he is only 20 years old and is trying to be optimistic about the future. “I hope that teenagers will think twice before they take Accutane; I wouldn’t wish this condition even on the opposing hockey team,” he says, laughing.
But Accutane Ulcerative Colitis and Accutane Crohn’s Disease is no laughing matter, as Jacob can attest. “I took the acne medication when I was in grades 9 and 10, and don’t remember anyone telling me about Accutane side effects,” he says. “Leading up to my diagnosis, I had constant diarrhea and lots of pain, all the fun stuff. About three years ago, I saw a gastroenterologist and I had a colonoscopy. He didn’t tell me much about how I got this disease, but he did say it was not hereditary, what foods to avoid and what meds I have to take. I am very young to have to deal with this and I am also really mad at the Accutane manufacturer - my doctor said there is no cure for ulcerative colitis.”
After Jacob’s diagnosis, he was referred to another specialist, who he sees if he has another “flare-up” or colitis attack. An attack can sometimes last for a month, which makes life very miserable.
“It means that I can’t go very far from a washroom,” Jacob explains. “At times the pain is pretty bad so I can’t focus at work. I have a summer job driving fuel trucks to trains so it can be difficult to handle. During the rest of the year, I play hockey for a junior A league called the NOJHL - Northern Ontario Junior Hockey League. I can play one more year in the junior league and I’ve lucked out because it has never interfered with my game, but sometimes it has during practice. I try to focus on what I am doing on the ice and try to ignore the Accutane side effects.”
About two years ago Jacob saw an ad on TV about Accutane and its link to Crohn’s Disease but, being a teenager, he didn’t give it much thought. “Last April 2012, I started getting sick and had an attack that lasted more than a week,” Jacob says. “That is when I saw the specialist. We had no idea how this could have happened because I have always taken care of myself and always eat healthily. Accutane could only be the cause.
“I believe the Accutane maker is very careless. I was told that this drug could also affect your mood and your liver. If I had known it could also cause colitis, I would have suffered through acne; I would have found safe alternatives. If only I had known.
“Now I have to avoid all processed foods because of nitrates; anything high in fat; certain raw vegetables (carrots are only OK cooked); any dried fruit and dried nuts (but I can have peanut butter); no fruit with seeds and no breads with seeds. In other words, I have to be very diet-conscious. When I travel and go out to dinner with the hockey team, usually our meals are pre-ordered and they are pretty healthy, but as far as snacking goes, I have to watch those snack bars.
“Another concern is the cost of the medication, which is the main reason why I am pursuing an Accutane lawsuit - I believe it is only fair to get those costs reimbursed. Right now my meds are covered until I am 21, and for a 90-day supply I pay $35 with insurance coverage. After that I will have to pay $135 per month for the rest of my life, unless they find a cure. As well, when a flare-up occurs, I have to take another med that is not covered by insurance.
“If my condition worsens, I will have to switch meds and those stronger meds have other side effects. I am taking a mild drug now for colitis treatment but the med above this is a steroid, and it causes bloating, mood swings, infertility and more nasty side effects. I am told by specialists that the stronger the med, the harder the side effects on the body, so it goes without saying that I am worried about the future.
“And one of my biggest concerns is the social factor. I worry that certain people will not understand the kind of things I have to deal with while having colitis. Being as young as I am, I have to sometimes give up going out with friends or watching the game with them, or even going to a party with the rest of my friends. Another issue is relationships, where being with a person feels like a burden on them because of how I am, and that makes me worry if they judge how I am.
“So in a way, Accutane prevents me from living life to its fullest.
“Another thing that I fear greatly is if the colitis grows to be out of my control. When there is no controlling it, the final solution is to go for surgery to remove the infected area of the intestine. Sometimes it is a portion, sometimes it can be almost all the colon. That would result in a recovery requiring a temporary colostomy bag until the healing is complete. In some cases, it requires the permanent wearing of one, which scares me greatly, because it’s something that would make me insecure and my quality of life would really go downhill.
“I wish that the Accutane company would come forward and take responsibility for the damage that they caused. They owe me - and a lot of other Accutane users - a new life.
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