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Crohn's Disease Forum » General IBD Discussion » New patient, diagnosed with Crohn's, starting meds, confused


03-08-2016, 01:20 PM   #1
lauraine
 
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New patient, diagnosed with Crohn's, starting meds, confused

I have just been diagnosed with crohns desease, and I'm so confused. I don't seem to have most of the symptoms I gave read. Could they be wrong? I don't have stomach pain , the odd cramp, no diherea. I have had the test done ,waiting on blood test results. I do have an ulcer, blood in the stool, back pain and some joint pain. I don't know what to do now, starting meds today. I'm confused
03-08-2016, 01:23 PM   #2
JaimeM
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Every Crohns patients is different. it also depends where your crohns is located as to what symptoms are sort of normal. I didn't have diarrhea at all until somewhat recently and I've had crohns for probably 10 years
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Diagnosed Terminal Ileum Crohns 2008
Remicade 6yrs
Had a healthy baby boy 2014
Switched to Cimzia but didn't work 2015
Back to Remicade and added Azathioprine 2016
03-08-2016, 01:33 PM   #3
scottsma
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Hello and welcome.You've obviously had tests to have been diagnosed with crohns ?
It's always confusing and stressful when everything is new to you.But we are all different,ie,Symptoms,diagnosis,meds,diet etc.etc.Just take one day at a time,see if your meds make a difference,and if you're not happy,get back in touch with your Gastro.
You will get lots of support,advice and friendship on the forum.Ask anything you're not sure of and have a look at the threads that interest you.Please don't get scared though,because many people have a hard time and struggle daily,but many others,myself included,manage quite well mostly.I hope today is a GOOD day for you.
03-08-2016, 03:05 PM   #4
hcrum87hc
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As the others have said, Crohn's symptoms are definitely not the same for everyone. If it weren't for my stricture, I would have very minimal symptoms, and most days would forget I have the disease. D has never been an issue for me, nor has frequent BMs, which seem to be fairly common. You do have to take it day by day.
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Blessed is he who trusts in the Lord, whose confidence is in Him. Jeremiah 17:7.

Officially diagnosed with Crohn's Disease in June, 2014 2 weeks before 27th birthday after ER visit due to partial blockage (stricture).

Current Meds:
Humira-40 mg every other week
Imuran-150 mg/day

Surgeries: Ileocecectomy 7/13/16 removed 60cm of small intestines.

Status: All inflamed and strictured intestines removed. All remaining intestines are currently healthy.
03-08-2016, 06:04 PM   #5
ronroush7
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Maybe you have a mild form right now. Like the others have said everyone is different.
03-09-2016, 09:04 AM   #6
caretothepeople
 
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As others have mentioned, everyone's Crohn's is different. It can help to speak with your doctor and ask questions to find out more about the diagnosis, including these that Mayo Clinic suggests:
  • What's causing these symptoms?
  • Are there other possible causes for my symptoms?
  • What kinds of tests do I need? Do these tests require any special preparation?
  • Is this condition temporary or long lasting?
  • What treatments are available, and which do you recommend?
  • Are there any medications that I should avoid?
  • What types of side effects can I expect from treatment?
  • Are there any alternatives to the primary approach that you're suggesting?
  • I have other health conditions. How can I best manage them together?
  • Do I need to follow any dietary restrictions?
  • Is there a generic alternative to the medicine you're prescribing me?
  • Are there any brochures or other printed material that I can take with me? What websites do you recommend?
  • If I have Crohn's disease, what is the risk that my child will develop it?
  • What kind of follow-up testing do I need in the future?

The CCFA has lots of educational information about Crohn's on their website. They also provide a list of questions to ask the doctor: http://www.ccfa.org/what-are-crohns-...ns-to-ask.html

If you are concerned, sometimes getting a second opinion can help too to confirm the diagnosis is correct.
03-09-2016, 06:01 PM   #7
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Usually the doctors aren't quick to make a diagnosis unless they know for sure, so most likely you do have crohns. That being said, everyone's symptoms seem to be a little different, which may be why you are confused. I've been very fortunate to only have 2 flairs in 17 years. I thought maybe it was a misdiagnosis, but apparently, there are some people that can be in a long remission. Anyway, in my second flair, I was in denial for a long time because all I had was bleeding, no other symptoms at first. Eventually I started to have diarrhea and urgency, but I never even had any stomach pain. This was different than my first flair in which I had no diarrhea, but did have other symptoms like fever, canker sores, arthritis, stomach pain.

Anyway, best of luck to you. You are not alone and hopefully you find the right combo of meds to feel good.
03-09-2016, 06:08 PM   #8
ronroush7
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Best to you.

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