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Crohn's Disease Forum » Your Story » Undiagnosed and in severe pain...help


08-07-2017, 09:28 AM   #1
chronicallyillsarah
 
Join Date: Aug 2017
Undiagnosed and in severe pain...help

Hi everyone!! I'm new to this site and I am so happy that I stumbled upon it today. Here's my story (I am looking for opinions as to what this sounds like / further steps I should take):

About 5 months ago I was admitted to the hospital with severe pain in my uppe right stomach area and got morphine. They thought it was my gallbladder. Long story short they found fatty liver and told me to go to a GI doc.

Shortly before then I started to notice that I would have ~10+ diarrhea incidents / day--about 30min to 1 hour after eating. This has not stopped.

Here are my symptoms:
Symptoms (~4+ months)
Intermittent low grade fevers (99.3 seems to be the average)
Right upper quadrant stomach pain / abdominal pain
Diarrhea
After eating anything
Approx 30min-1hr after ingestion
Either beige or tarry / loose watery
brown
When beige there is often a lot of
undigested food
Associated with abdominal pain
Body aches / chills
Severe exhaustion
Mouth sores
Night sweats
Nasal congestion
Upper right back pain

I've had a colonoscopy and it came back normal. And I have an upper endoscopy scheduled for the near future. I'm onto my second gastro because I'm just not receiving answers or comfort. I'm in severe pain all the time and I really have no idea what to do.

I've been doing a lot of research and this really sounds like Crohns to me. Did anyone else have a similar experience?
08-07-2017, 10:02 AM   #2
ronroush7
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Location: vienna, Virginia

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Welcome. I can't be sure but i think a lot of it could be associated with Crohn's disease. About the severe exhaustion, have you had blood work done to see if you might be anemic ? I hope you get some answers and relief soon. Keep us updated.
08-07-2017, 10:04 AM   #3
chronicallyillsarah
 
Join Date: Aug 2017
Thank you so much for the speedy reply. I've gotten a lot of blood work done. My kidney functions are not so good. I'm not anemic however I was diagnosed with postural orthostatic tachychardia and chronic fatigue syndrome when I was 14--however the chronic fatigue has gotten increasingly worse with the start of these symptoms. Any suggestions on what I should tell my doctor /how to lead her to a diagnosis?
08-07-2017, 10:42 AM   #4
ronroush7
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Location: vienna, Virginia

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Ask the doctor what they think about a MRI?

08-07-2017, 02:55 PM   #5
Scipio
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Join Date: Oct 2015
Location: San Diego

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Yes, an MRI to look at your small bowel would be an excellent idea. Another approach would be a capsule camera endoscopy. Since the colon looked normal you need to get a look at the rest of the gut to see what's going on in there.
08-07-2017, 02:56 PM   #6
JessPeper
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Location: Wisconsin Rapids, Wisconsin

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When they did testing for your gall bladder did you have a HIDA scan done?

I had had blood work done multiple times and was told there was nothing wrong with my gall bladder. A new doctor had finally done a HIDA Scan and it turned out my gall bladder was actually over active not failing and that's why the blood work would come back normal.
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3rd Generation

Dx with CD 4/16

Ileocecectomy 3/17

Reoccurrence 8/17


Current Medications: Lialda 4.8g daily, Azathioprine 100mg daily, Prednisone 20 mg daily. B12, Folic Acid, Primal Defense probiotic.
08-07-2017, 03:19 PM   #7
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
My daughter had a video capsule that they places into her stomach during a scope. It was able to catch images that they colonoscopy and endoscopy missed. I know you can just swallow the capsule also, but since they were already in there they just placed it.

I would look into an MRE and possibly the video capsule if your scopes didn't show anything.

I hope this helps.


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