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Crohn's Disease Forum » Your Story » Recently Diagnosed


02-25-2014, 04:48 PM   #1
lovebunnyga
 
Join Date: Feb 2014
Location: Kennesaw, Georgia
Recently Diagnosed

Hi everyone!

My name is Ceci, and I was diagnosed in December of 2013 with Crohn's Disease. Fortunately, I seem to be early in the disease, but the symptoms are progressing at a rapid pace. I first started having issues in July of 2013 when I went to the ER in the middle of the night with abdominal pains. What the found was Intussuseption of my intestines. By the time I got onto the operating table to have it fixed and they opened me up, it had fixed itself! My next symptom arrived in early October where coming from class I started having the same abdominal pains. The pains got so bad that I was curled up on my bed with tears streaming down my face. Eventually the pain increased so much I ran to the toilet and threw up! What's weird is the pain went away shortly after I vomited. That was another trip to the ER.

The last trip to the ER was the worst. I was visiting a friend for the weekend. The first day my tummy was a little iffy. That night the pain seemed to come back, but by morning it was gone. Then I tried to eat! Yeah, that was not happening…had one bite of a sandwich and I had sharp stabbing pains! I couldn't eat anything the rest of the day, but was finally able to get a little soup down that night. I fortunately left for home the next day. Didn't eat anything, just drank fluids, and not and hour after getting home the REAL pains began. Went to the ER and the pain was so bad, the worst pain I have ever had! It went beyond a 10 on the pain scale. I was crying, and started throwing up again in the ER. But unlike the last time, the pain didn't go away when I threw up…of course since I hadn't eaten anything the only stuff I was throwing up was water and some white foamy stuff (I don't have stomach acid due to gastric bypass). It took several shots of Morphine and anti nausea meds to stop it.

That is when my doctor referred me to a GI specialist. Did blood work, colonoscopy, and an EDG. Both the colonoscopy and EDG came back clean, but the blood work showed an elevated level that indicated Crohn's. I don't have a family history of it as far as I know. I was adopted by my father's parents and never knew much of my bio mom's family, so if there is a history it would have to be on her side.

Anyways, before last month I didn't have diarrhea, just pain. However, now I have LOTS of diarrhea AND pain!! I take pain meds which help both with the pain and it firms up my bowl movements. Due to gastric bypass my specialist is worked about what meds to give me. The first med, Lialda? my insurance won't cover, so now I have to do more blood work so she can see if she can put me on something else.

I am glad to have found this forum. I have read many stories here, and it's great to not feel alone! I know I am a baby to this stuff, but I have immense respect for all of you that have dealt with this for so long. You all rock! You give me hope that I can get this under control, cause you know what…this stuff sucks!!
02-26-2014, 05:17 PM   #2
David
Co-Founder
 
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Join Date: Feb 2006
Location: Naples, Florida
Hi there and welcome to the community.

My first suggestion would be to find a gastroenterologist that specializes in Crohn's disease in your area and pay them a visit. I say this because no GI should diagnose Crohn's disease based upon a blood test when a colonoscopy comes back clean. I'm not saying you don't have Crohn's disease, but you want to make darn sure you have it and not something else and there aren't any blood tests that give yes/no results. There's some expensive Prometheus testing but even those tests are only sign posts because of their high false positives and your symptoms, especially in the face of existing gastric bypass, are not enough to clinically point to Crohn's.

Was the gastric bypass for weight loss?

All my best to you.
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02-26-2014, 05:26 PM   #3
lovebunnyga
 
Join Date: Feb 2014
Location: Kennesaw, Georgia
Yes, I had the gastric bypass for weight in February of 2012. I think another reason why they diagnosed me with Crohn's is the fact that I have almost constant diarrhea. So much so, that there have been days that I have gone to the potty over 20 times! I will have days of this, and that combined with abdominal pain when I eat, and even when I don't eat. Alcohol is a big no no for me now too, which was never the case before. All of this just popped up a few months ago, and with no other known reason.
02-26-2014, 09:55 PM   #4
David
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Join Date: Feb 2006
Location: Naples, Florida
I know you don't want to hear this (at least I certainly wouldn't) but even with all of that, I'd strongly recommend a second opinion from a Crohn's specialist. I have read thousands and thousands of Crohn's stories and once in awhile one pops up like yours where I think a second opinion from someone who only deals with Inflammatory Bowel Disease would be a good idea.
02-27-2014, 05:52 PM   #5
MicheleM
 
Join Date: Nov 2013
Location: Winnipeg, Manitoba

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I will second David's opinion. I think you should try to see a Crohn's specialist. A blood test is not enough to diagnose Crohn's. My specialist would not rely only on a blood test. He also took a biopsy, CT scan, and a scope so he could actually see the inflammation as well as have the biopsy analysed by a pathologist. My GI specializes in Crohn's. In light of your previous surgery, I think it would be wise. Good luck to you! I know this sucks.
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