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05-03-2014, 02:22 PM   #1
Kirsten
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Update on me

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 :,(
05-03-2014, 02:28 PM   #2
Clash
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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
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
05-03-2014, 02:42 PM   #3
Kirsten
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I am still on remicade they uped my dosage but I'm experiencing bad side effects and as for a next step I have no idea
05-03-2014, 02:43 PM   #4
theOcean
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Are you being given antihistamines and/or steroids before the infusion to combat the side effects? Have you had an antibody test done?
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-03-2014, 02:45 PM   #5
Kirsten
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No my doctor seems to think its nothing and doesn't want to see me till the end of June
05-03-2014, 02:48 PM   #6
theOcean
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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.
05-03-2014, 02:50 PM   #7
Kirsten
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It's just hard since I'm not an adult sometimes I think my dr thinks I have no idea what I'm talking about
05-03-2014, 03:09 PM   #8
theOcean
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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?
05-03-2014, 03:16 PM   #9
Kirsten
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I doubt my mom is the one he schedules my appointments I just can't wait to switch doctors when I'm 18
05-03-2014, 03:29 PM   #10
theOcean
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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?
05-03-2014, 03:31 PM   #11
Kirsten
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Where I am from I have to see a pediatric gastro until I'm 18
05-03-2014, 03:35 PM   #12
theOcean
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I wasn't diagnosed until 19, so I'm actually not too sure. Are there not many other pediatric GIs there?
05-03-2014, 03:37 PM   #13
Kirsten
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Not that could get me in and the one I go to is an hour away from
05-03-2014, 03:41 PM   #14
theOcean
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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.
05-03-2014, 03:43 PM   #15
Kirsten
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Yea I was so close to being I'm the hospital the other day from a treatment
05-03-2014, 03:45 PM   #16
theOcean
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Oh jeez! What reactions are you getting to the Remicade? I was actually severely allergic to it too, which is why I'm on Humira now.
05-03-2014, 03:56 PM   #17
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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.
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Diagnosis: Moderate Crohn's, 2001
Current Medications: Remicade every 6 weeks, Asacol 2 pills 3 times daily, Entocort 3 pills once daily
Currently: Recovering from a mild flareup
Main Symptoms: Stomach cramps, loss of appetite, constant weight fluctuations
05-05-2014, 06:58 PM   #18
Kirsten
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I get headsches and I get low grade fevers and dizzy and lately I don't know if it's from a treatment or what but my side been all messed up
05-05-2014, 07:32 PM   #19
theOcean
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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?
05-05-2014, 07:33 PM   #20
theOcean
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The dizziness may mean you're losing blood somewhere and that you might be low on iron and B12.
05-05-2014, 07:35 PM   #21
Kirsten
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Well it's not the first fever I've had he says I'm getting them when I get the headaches
05-05-2014, 07:37 PM   #22
theOcean
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Are they always accompanying a headache? Even so, I don't think that's normal...
05-05-2014, 07:38 PM   #23
Kirsten
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Yea right after a treatment
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