Long story short
I'm in the midst of a flare up as we speak. I slept from Sunday and woke up Thursday with a lot of throwing up and showers and everything else in between. I was diagnosed with Crohn's in 1985 when I was 15 years old... I just turned 50. I went untreated for over 20 years.
I was tired of being treated like a guinea pig. Now I have been going through many tests and exams some of them two and three times over and over. I'm getting a little frustrated now they want me to start stelara. I feel like everybody just talks and talks and talks and nobody's listening to what I'm trying to say. Nobody tells me anything, about food or anything else for that matter. No one seems to care that I've gained over 60 lb in approx 2 years. It just seems that it's all about starting this treatment stelara.
I can't ask the nurse any questions. My doctor doesn't have any time. He talks so fast I don't even know what he's talking about half the time. I also find it very strange that a stelara rep will call me, all pumped as if I'm the doctor at the end of the year that's getting a cruise to Tahiti. Letting me know how expensive it is and do I have insurance? I live in Canada. Nobody has time to sit down and have a conversation with me, and I'm overwhelmed. I'm in pain. I'm drained but of course if any friends and family ask "I say I'm fine". I do not know who to reach out to or who to call at this point. I'm even thinking of going private but I really don't know anything about it. Any help from anybody would be greatly greatly appreciated.
Will you help us understand the impact of Crohn's & colitis by taking the IBD In America Survey (US only)?