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Update on me

Kirsten

Kirsten

Location
Pennsylvania
To update on what's going on with me and my Crohn's disease lets say its getting worse I had a test done and I have it all through me from my small intestine to my colon it's so painful and making me really sick and it's hurting me in more ways then one things are Just really up in the air right now with my health and that's making it very difficult for me to be able to live my life as a teen and already looks like it might be changing my dreams I had for my future it's definitely Been hard it's been a year since I was diagnosed and it's been a hard sad and messed up year :( :,(
 
Clash

Clash

So sorry to hear of the latest test results. Are you still on remicade? What are they recommending as the next steps?

I hope they can quickly find a way to get your CD under control and bring you some relief.HUGS
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
Tell your doctor it isn't nothing and you need to be seen sooner. You should be able to tell the people who administer your Remicade at the time that you need steroids/antihistamines and you don't need your doctor for that.

I had a really passive doctor who wouldn't help me when I was sick and I ended up in the hospital repeatedly and almost died. If you feel like there's something wrong, be aggressive and fight for yourself. You know your body better than your doctor does.
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
I understand. Even if you're not young, I think a lot of patients have that experience with their doctors. Do you think if you maybe got a parent to call for you and insist that you need an appointment the secretary or doctor might listen?
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
That's really frustrating... can you go to your GP and ask them for a referral to a new GI? I don't think you need to wait to be 18 for that. And if you do, would your mother maybe ask for you? Does she see how your doctor isn't listening to you?
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
That's unfortunate then, I'm sorry. :( I guess, in the meantime all you can do is ask the nurses when you go for your next Remicade infusion about an antibody test and telling them about the reactions you get. They should listen to you or your mother even if your doctor might not, and then they could inform him for you. He might be more willing to listen, then.
 
Stew

Stew

This sounds really frustrating. I've had Crohn's symptoms since I was 12 and had the same GI since I was 15 or 16. I never knew there were pediatric GI's out there, it doesn't make a lot of sense to me to have a different one from being a minor to an adult.
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
Fevers are never a good sign, and almost always mean you need to contact your doctor. Either you need to see your GP to get antibiotics, or you need to go to the hospital depending on what infection your body is fighting.

Can you get a doctor's appointment about the fever soon?
 
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