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11-15-2015, 03:30 PM   #1
hcsbcs
 
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New here and would like advice

I am a 36 year old female dx with Crohn's officially/unofficially. Let me explain in hopes someone can help me.
Prior to 2011 I was told by my symptoms I had IBS by my PCP. In 2011 I finally caved after yet another severe abdominal cramping (to the point of fainting) episode I went to the hospital. Normally I'd curl up in a ball and ride it out. The diarrhea episodes (no bleeding) were sporatic, but would make me sweat profusely from the pain and cause me to vasovagal but would normally go away. I also would have constipation that I would bleed from fissures or hemorrhoids. But that is the only time I have ever noticed blood. This particular episode lasted way to long so I went. I got admitted and told I had thickening, fatty stranding, mild dilatation from the proximal to the distal ileum of the small intestine. I was admitted for 4 days with a full work up. All my labs came back normal, had a colonoscopy a few days later and that was normal as well. They said it was probably a virus and not to worry. So, another few years of the episodes. In 2014 I ended up back in the ER with the same episode this CT scan revealed mild dilated fluid filled distal small bowel loops at the terminal ileum or acute inflammatory change. And possible ileus. It also said due to so much edema my colon was decompressed. After this episode I saw a GI doc who listened to me and spent a good hour and a half with me. He said he was pretty sure I had crohn's disease and that it is very hard sometimes to diagnose. He wanted to do a pill camera study but I never followed through because I felt better (I am an ER nurse, we don't listen well :-/) My most recent episode that has change my life to this point happened this past August. Same episode nauseated, severe abdominal pain w/soft formed diarrhea that about caused me to pass out, but the difference was my joints hurt really bad, they burned, my knees, elbows and my hands felt stiff. It scared me so I went to the ER again. Another CT scan showed mildly abnormal but nonspecific small bowel appearance and minimal diverticulosis. All my lab work again completely normal. Since then I am extremely fatigued, my joints make me feel like I am an old person, I hurt EVERDAY like I have the flu. I spend my days in bed sleeping and hurting all the time in between work. My stomach is still very tender. No one can press on it because it is so tender. It's been that way for years. All my abdominal pain has always been in my Right lower side. I am also very nauseated all the time. I've lost about 20 pounds with no exercise or dieting. I just can't eat or eat very little. I need help....
Is this extreme fatigue, joint pain/stiffness, and flu like aching from the crohn's? I take hyoscyamine for the severe cramping as needed and it helps. I also am taking tylenol, motrin, and ultram through out the day so I can somewhat function.
Thank you in advance for any advice!!!
Super stressed exhausted ER nurse....
11-15-2015, 03:54 PM   #2
ronroush7
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I would especially say the extreme fatigue comes with the Crohn's. Maybe the joint pain. Most of the time when my blood is checked I am anemic. I wish you the best.
11-15-2015, 04:01 PM   #3
ronroush7
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I also take the Levsin.
11-15-2015, 04:28 PM   #4
hcsbcs
 
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I've never had any of my labs abnormal. I go back Dec. 1. I am just miserable right now. Thank you for the advice.
11-15-2015, 04:40 PM   #5
ronroush7
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You are welcome

11-15-2015, 05:14 PM   #6
hcsbcs
 
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I also have hyoscamine. Works great when I am having the severe cramping. Just need help with this joint pain :-(
11-15-2015, 07:05 PM   #7
Clash
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Joint pain can be a definite EIM (extra intestinal manifestation) of CD. There are many EIMs that can come with CD. You can Google to get a good list but it can involve akin, joints, eyes etc. Fatigue does often come with CD flares. The tenderness you describe can be present as well. As you know being an ER nurse there are a myriad of GI issues that can cause the symptoms you describe.

Have you had a fecal calprotectin stool test? It tests for inflammation in the bowels only, so more specific than say CRP or SED. My son always has had normal labs more often during flares than abnormal ones.

I would keep pushing for answers. Hispefully with a dx they can get you back to normal energy levels and pain free. Good luck.
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Clash
Mom to
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
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