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Crohn's Disease Forum » General IBD Discussion » New Here... Need help managing symptoms


01-04-2015, 05:57 PM   #1
sfoss
 
Join Date: Jan 2015
Location: Phoenix, Arizona
New Here... Need help managing symptoms

Hi everyone.
This is my first thread. Let me first start by saying I have not been fully diagnosed yet; I am in the middle of testing for diagnosis but have symptoms and could use some help.

A little background: I'm currently 27. 12 years ago my appendix ruptured. A few months after, I had symptoms. After 3 colonoscopies, a barium x-ray, and two endos, it was determined I had IBS although i did have blood in my stools and inflammation.

From then until now, I've continued having symptoms but chalked them up to IBS. Over the past month, they've been the worst since my IBS diagnosis so I went in. These are the symptoms I'm having right now:

-blood and mucus in stool
-constipation and diarrhea
-constant bloating and gassiness (seriously constant, my stomach is always rumbling and tightening)
-feeling like there is a lump in my throat, but no heartburn-like pain
-extreme cramping before a BM, and when I am having one, pain and full-body sweat

I don't know if this is just severe IBS or something more, but if this is anything you have experienced, I'm wondering if there are any remedies or ways to reduce symptoms.

I had a blood draw, and the following are results.
Name Value Reference Range
ANCA Screen NEGATIVE NEGATIVE
Myeloperoxidase Ab (MPO) <1.0 <1.0 AI
Proteinase-3 Antibody <1.0 <1.0 AI
S Cerevisiae Ab IgG 16.7 U
S Cerevisiae Ab IgA 26.5 U

My doctor called and said that the IgA is positive for Crohn's, but that it needs to be confirmed with a colonoscopy and CT-scan. The scan is tomorrow but I couldn't get the colonoscopy scheduled until Feb 16.

I guess really I'm just in this limbo of waiting and am wondering if anyone can give me some support. I want these symptoms to go away, and I'm wondering if the Crohn's was overlooked and misdiagnosed as IBS those 12 years ago.
01-04-2015, 06:24 PM   #2
DJW
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Join Date: Jul 2013
Location: Ontario

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Hi and welcome.

Sorry you're going through this. There are lots of people here undiagnosed and waiting.

If you haven't tried I'd suggest a food and symptom journal to see if there are problem foods.
Have you been tested for celiac disease?

Sending you my support.
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01-04-2015, 06:27 PM   #3
sfoss
 
Join Date: Jan 2015
Location: Phoenix, Arizona
Hi and welcome.

Sorry you're going through this. There are lots of people here undiagnosed and waiting.

If you haven't tried I'd suggest a food and symptom journal to see if there are problem foods.
Have you been tested for celiac disease?

Sending you my support.
Thank you. Yes, I was tested for Celiac and everything came back normal. I had a CBC as well as tests to check for inflammation. The only thing that came back was very very mild (by .1) anemia.
01-04-2015, 06:45 PM   #4
DJW
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The colonoscopy is key for a proper diagnosis. Can you call and get on a cancelation list?
01-04-2015, 06:46 PM   #5
sfoss
 
Join Date: Jan 2015
Location: Phoenix, Arizona
I'm trying to. Also calling Mayo to see if I can get in with one of their GIs sooner.
01-05-2015, 04:53 AM   #6
DEmberton
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I was told IBS 20 years ago, I think wrongly, and like you when things got worse I put it down to IBS and didn't seek help when I probably should have. I never had any blood, but other than that your symptoms sound exactly the same as mine. In my case it was the CT Scan that made it clear, the colonoscopy wasn't conclusive.

Avoiding all fibre did help reduce the symptoms, as did giving up tea and coffee, alcohol, most fruit and vegetables, and basically anything interesting ;-).
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