Crohn's Disease Forum » Your Story » Not yet diagnosed.


06-23-2011, 03:47 PM   #1
hecallsmekitten
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Not yet diagnosed.

Hi! My name is Crystal. I am a housewife and stay at home mommy. I love the life I have. But, it seems that my body is out to get me. My illness started a few weeks after I gave birth to my son in November, 2008. Long story short there, I got extremely sick, dehydrated, was in horrible pain and ended up having my gallbladder removed in an emergency surgery. After that, things got better and then got worse. I've had horrible pain in my upper stomach, regurgitating undigested food, GERD, nausea, constipation/diarrhea, chronic fatigue, muscle weakness. With those symptoms my GP sent me for a gastric emptying study, that showed that I have Gastroparesis. So far it hasn't been responsive to any of the medicines that have been prescribed. That has all happened in the last year. I've also had several trips to the ER for fluids/nausea meds. My grandmother insisted that I see her specialist. About a week before my appointment with him I got horrible ulcers in my mouth, which I didn't think much of as having to do with my digestive tract. I also have horrible back/joint pain with muscle spasms. I have since I was about 15. I've even developed a big cyst on my left wrist joint. After hearing my symptoms he said he thought it was likely that I have Crohn's disease, especially since we have a family history of it (I was unaware). He put me on Erythromycin as a last resort for my gastroparesis, which hasn't worked and has had some really horrible side effects like chronic yeast infection. He has sent me to have the Prometheus Serology 7 blood panel, but we won't know anything until it comes in in a few weeks. It just feels like there is nothing that I can do. They won't treat any of the pain, nausea, or fatigue that I feel because they say that the medicines will further slow my stomach. But the way that I feel at this point is this: I am so tired and in pain that I cannot spend time with my son unless I sleep with him at night. I cannot be a good wife to my husband. They've told me it's incurable. I just want to *feel* better, even if my condition is a little worse.

I feel a little strange about posting here since I don't have an official diagnosis yet, but I really needed to vent. Thanks for readin.
06-23-2011, 05:21 PM   #2
xJillx
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Hi Crystal and welcome! Don't feel strange about posting without a diagnosis. We actually have a section devoted to those who are awaiting their official diagnosis:

http://www.crohnsforum.com/showthread.php?t=13113

Based on your symptoms and family history, it does sound quite possible that you have Crohn's. Have you done any other tests such as a colonoscopy or endoscopy? They are the most reliable tests, though not the most pleasant.

I sure hope you get answers soon. If you do have Crohn's, you can begin treatment and hopefully start to feel better. Please keep us posted and let us know those results!
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Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
06-23-2011, 05:48 PM   #3
hecallsmekitten
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Thanks xJillx. I have had an endoscopy, but my surgeon was kind of a jerk. He gave me minimal results. He said that it looked like my stomach lining was really irritated and that I still had undigested food in there. He said it was out of his hands after that and my GP at the time just wanted to hand me off to yet another doctor. They pretty much tried to chalk it up to extreme acid reflux and gave me some acid reducers to help heal my stomach. What is so funny, is my doctor at the time gave me pain meds to help with the horrible upper stomach pain that I was having but then when we find out that it isn't just acid reflux, they won't so much as talk about pain management.
06-23-2011, 06:52 PM   #4
xJillx
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Well, of course pain management is important, but I think with IBD, doctors don't want to mask symptoms. I mean, if you keep covering up the pain, how are you supposed to know when you are flaring? What needs to be done is address the inflammation which causes the pain. Therefore, once the inflammation is gone and you're well, you won't be in pain. However, they won't treat you until you get an official diagnosis. And, in my opinion, positive biopsy results from an endoscopy and/or colonoscopy is the best bet to get a GI to make a diagnosis.

So, let's see what your Prometheus Serology 7 blood panel, but regardless of the results, I'd suggest having a colonoscopy.
06-23-2011, 07:04 PM   #5
teeny5
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I hope you get some answers soon. My prometheus test came back "not consistent with IBD" however on the colonoscopy it was obvious. I also had an upper GI series and a CT scan. Short answer...it may take a few tests to find out what is going on so hang in there. They should also be watching your inflammation with blood tests (ESR or sed rate). I think a colonoscopy is the best bet...really the only way they can actually see what is going on. Oh, and if you have a doctor that doesn't listen...get a new one!
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06-23-2011, 08:34 PM   #6
carolhew
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My IBD serology 7 came back not consistent with IBD too! GI made the diagnosis on what he saw on the colonoscopy, biopsy results and CT scan.

Carol
06-24-2011, 01:20 PM   #7
Dayz
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I have also not had a clear diagnosis yet but I understand exactly what your going through. My fatigue is horrible and I have joint pain that is severe more so than my stomach cramping- which is pretty bad. If you ever need to chat I am here for you ; ) join us in the undiagnosed club- youd be surprised how many people are in the same boat. I truly hope you find some answers and that you receive proper treatment.
06-24-2011, 01:47 PM   #8
mayhavecrohn's
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I don't have an official diagnosis yet eather i know what you mean hang in there i am here to listen if you need to talk
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