Long story short

By jocey

1 min read

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.

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thedancingcrohnie Moderator & Contributor
<inline-mention user-id="2249174" username="jocey"/> , I am so sorry you are going through all this. I don't know much about how the medical system works in Canada but are you able to change doctors? If you feel like you aren't being taken seriously by your doctor I would absolutely change until you find someone who listens to you and offers a treatment plan you are comfortable with. As far as Stelara goes, I was on it. I actually really liked it and had zero side effects except for headache in the beginning but that went away. Unfortunately it didn't seem to keep my symptoms at bay but many have a lot of success with it. Have you tried reaching out to a Dietician to discuss the weight gain? I worked with one and again found it to be super helpful. They will also help educate you on food which is nice. I know how you feel too, about feeling like a guinea pig. It is so exhausting and there are moments where you just start to lose trust in the entire medical community. I've been there. But just know that if you are unable to keep symptoms under control naturally, which I have also tried, medicine is at our disposal for a reason. The way in which we find what medicine works can be so frustrating but I will say, once you do find something that works, it is so relieving. Maybe trying the Stelara won't be so bad? The goal is for you to feel better and have better quality of life. I'm sending big hugs your way. I know how you feel and I just want to encourage you to not lose hope. Remain patient. Try to see a new doctor and just know that tomorrow is a new day and you will get another chance at getting closer to relieving symptoms. Rooting for you. Elizabeth (team member)
Sahara Fleetwood-Beresford Moderator & Contributor
I'm so sorry to hear what you're going through <inline-mention user-id="2249174" username="jocey"/> . It's not right that you can't get answers and have a proper conversation with your doctor. Would it be possible to get a different one? I'm in the UK, and whilst a dietitian is not something we have easy access to, if weight and food are a real problem, it's something we can ask about being referred for, and it does usually get done! I hope the Stelera will help ease some of your symptoms and give you some relief! - Sahara (team member)