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Crohn's Disease Forum » Your Story » I'm not sure what to think...


12-20-2013, 07:37 AM   #1
HeatKab
 
Join Date: Dec 2013
I'm not sure what to think...

I have been having issues with my stomach for over a year. The first time it was bad I was in north Africa having all sorts of crazy abodminal issues I had never had when I was there before. MY CRP and ESR were way out of whack and the doctors there said I had an autoimmune dosorder, probably RA (what?!?!), I was put on 3 different antibiotics and it eventually cleared. The second time I was home in the USA and my doctor thought my abdominal pain, nausea, vomiting and bathroom issues were all in my head and diagnosed me with anxiety, I went to a different doctor who found I had inflammation (again) and was severely anemic. Next they took out my gall bladder to see if that was the problem. It didn't make any difference. Following that they assumed I had ulcers, tested negative for h.pylori, and found to be anemic for the third time (this time my iron saturation was 8%). So they sent me to a GI specialist who tested me for celiac (negative) and did an upper scope. The diagnosis was gastritis and esophigitis. They also sent me to a hematologist to try and figure out what's up with the anemia, who says about 3 weeks ago he wants to keep an eye on my CRP which is elevated (inflammation again!). So, last week I ended up with pain so horribly intense I went to the ER (so bad my BP registered 177/100 intially!), they checked me for a bunch of stuff and did a CT and found I was really inflammed in my terminal ileum, and my ESR and CRP were crazy again (4th time), so it's not stress, not in my head, not my missing gall bladder, not gastritis or espophigitis or ulcers or any of the other crap they have been assuming. They admitted me with a diagnosis of colitis/Crohn's and I was there for 3 days, they did a colonoscopy and the specialist said he was unable to view the terminal ileum, so he was going to give me a diagnosis of IBS and wait for another "flare up" to do a camera capsule. He sent me out on a low carb, lactose free diet in addition to the GERD diet he already has me on. My stomach is hurting me today, I've been out for a week and I am getting sick of these issues. Anyone have advice? Does it normally take this long to find out exactly what the problem is?

Last edited by HeatKab; 12-29-2013 at 12:07 AM.
12-20-2013, 04:05 PM   #2
Write2bheard
 
Join Date: Dec 2013
Location: Federalsburg, Maryland

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It often takes quite some time and seeing more than one doctor. I don't have an issue with carbs per se, but instead of low carbs I'd say low residue (fiber). I also have trouble with most meat. I notice a number of folks on here take prednisone. I've not been given that. It makes me crazy. I went from Pentasa and Enticort to Remicade. Like you I had issues for years and had every possible diagnosis. Gall bladder removed. After losing 50 pounds I finally changed doctors. Had MRI, colonoscopy and a diagnosis in 2 weeks. Hang in there. Looks like they're close. Also I've found heating pad across stomach helps with the pain.


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12-22-2013, 10:46 AM   #3
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi there and welcome to the community.

The specialist who gave you a diagnosis of IBS? RUN FAR AWAY FROM THEM and find a new one. IBS DOES NOT cause inflammation like you are reporting. I suspect you have either Crohn's disease or, since this all started in Africa, gastrointestinal tuberculosis. Obviously there are other possibilities but it sure as hell IS NOT IBS.

We're here for you.
12-28-2013, 11:10 PM   #4
HeatKab
 
Join Date: Dec 2013
Hi there and welcome to the community.

The specialist who gave you a diagnosis of IBS? RUN FAR AWAY FROM THEM and find a new one. IBS DOES NOT cause inflammation like you are reporting. I suspect you have either Crohn's disease or, since this all started in Africa, gastrointestinal tuberculosis. Obviously there are other possibilities but it sure as hell IS NOT IBS.

We're here for you.
Thanks for those links, I am going to check the TB one out. I'm really disappointed with the GI specialist, especially since his diagnosis and the ER docs diagnosis were conflicting. I also feel it is something more than IBS, who has crazy levels of inflammation and chronic anemia with IBS? I've never heard of someone with IBS having pain the way I have had, especially when I was hospitalized for those three days. It just doesn't make sense. I will be looking for a second opinion.
12-29-2013, 08:10 AM   #5
Kero
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Join Date: Dec 2013
Location: Edmonton, Alberta

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Hi there, and welcome!
The waiting is the worst part it seems Hope you can get the the bottom of the issue and soon. Being always in pain sucks alot
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