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Crohn's Disease
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Posted 9/9/2012 2:27 PM (GMT 0)
Well..I got my records from my gi doctor for a consult with a colorectal surgeon. To put it bluntly, I am honking pissed and a bit disturbed. I am a nurse so I can interpret the tests. And reports. She has told me I have no active disease. My labs are normal. The pathology reports say a different story. On my last path report from the colonoscopy,I had crypt abscesses and moderately active crohns..sweet): my cat scan during that time showed long segments of scarring from previous activity and active disease in my terminal ileum..WTH?? This is after two Iv courses of steroids and multiple courses of antibiotics. And a course of oral steroids for two months.
Maybe it's my interpretation but honestly?i feel she minimizing my disease right now..because my labs are normal. My labs are always normal!!always. Inflammatory markers have historically been zero.
I'm glad I'm going to both a colorectal guy and an IBD specialist away from my town.there seem to be a limited number of gi doctors here and they all know each other. I feel my symptoms are no different than the other times I have flared and or headed for an obstruction. But now I'm just not heard..oh yeah..she 'diagnosed'me with anxiety disorder. That's cute since no mental health professional has ever diagnosed me with that..and i have seen a therapist for 8 years. And had a psychiatrist do an eval as part of the screening process for a pain mgmt doctor..no anxiety disorder. Yes,I have depression. I am well maintained on cymbalta. So she can blow it out her arse!
Thanks for letting me vent!!
Posted 9/9/2012 9:38 PM (GMT 0)
I would be angry too! Several years ago a similar thing happened to me. I was tested for a variety of possible problems to try and get to the root of my ever worsening health. I was told my tests were normal. I didn't believe him and sought out a second opinion. When I got all my test reports to take to the new GI, I freaked. It was there in black and white - a clear diagnosis. I fired the 1st GI.

Now I get a copy of EVERY lab, xray report, scan, MRI, etc. The local lab I use got tired of having me fill out the release form and got me one that lasts for ten years!

I hope your new doctor is more on top of things. Make sure to take a copy of the actual scan films or tke it on a disk. The new docs might want to view it themselves.
Posted 9/9/2012 11:38 PM (GMT 0)
I am so sorry. I feel your frustration. My labs are usually normal too but my symptoms are horrible. I am a healthcare professional and I also read my lab and radiology reports. I have noticed that they do not tell us the whole story. My last colonoscopy revealed ulcers but the reporting MD downplayed the ulcerations when talking to us after my procedure. There have been other situations as well. I would definately make copies and highlight these diagnosis that no one told you about and show to the proper individuals. My platelet counts have been increased many times when this has not been brought to my attention. I hope everything gets straightened out for you.
Posted 9/9/2012 11:45 PM (GMT 0)
It seems to be a scary trend.  I had 2 MRIs done this past year and after both my doctor would report that it showed continued inflammation and that was that.  I received copies of these reports when I went to a consult at the Cleveland Clinic that indicated free fluid in my pelvic area - - which is something I had trouble with years back and turned into a pelvic abscess that took months of antibiotics to clear and weekly ultrasounds to monitor.  In fairness to him, that was an emotionally trying time in my life (I was in grad school and this was my first real complication with my Crohn's) and he was very aware of how scared I was of possible surgery and was very supportive at that time.  I think he was trying to spare me the unnecessary worry.  I think a lot of doctors do that, especially if they are treating you and telling you how sick you are will not result in a change in treatment.  It can be disheartening though, I think we are all adults and can handle to hear what is going on in our own bodies.
Posted 9/10/2012 3:05 AM (GMT 0)
Oh thats horrible!  I have had almost the exact same thing happen.  I was told everything is fine and there is no indication of active disease because labs and everything were normal.  I got copies of the reports from the nurse and confronted the GI!  I ended up firing him when he missed an AVM in my colon the size of a golf ball during a colonscopy that was caught 3 weeks later during a colonoscopy at Mayo Clinic.

The GI I have now is awesome about that stuff.  She has the nurse call and give me the interpretation of the labs, radiology reports, etc... then mails me a copy of the actual report to review.

She has also noted that my CRP and Sed Rate have NEVER been elevated, even when I had to have emergency surgery for Crohn's related problems they were normal.  She said it happens like that for some people.  She has other patients whose labs always look fine but the colon is visibly diseased during scopes so she doesnt base my treatment on those labs but rather how I tell her I feel and what she can see and on my history.

Posted 9/10/2012 3:21 AM (GMT 0)
Thanks everyone for your kind thought and words! I was thankfully admitted finally to another hospital seeing a new set of doctors in my home town. The cat scan shows a lot of inflammation in my right gut..strangely(: where my pain has been!go figure!! My labs finally showed a low potassium levl which we all know points to..ahem...DIARRHEA!! Wow..really?!! So I'm hoping for a current colonoscopy which will be a good thing to have for my appointment in Chicago at the end or the month.
Much distress and pain could have been minimized had my other gi doctor listened to me.
Regardless, at least over night, I will have Iv fluids,pain control and anti nausea medicine. I am eternally grateful to have this tonight after many a sleepless night due to pain and diarrhea.
I WILL get all my tests and scans in hand. If I can, I will also have my pathology slides sent to Chicago ever they can go over them.
This is a scary trend. And I know I'm not alone. Why we cannot be heard and treated appropriately is beyond me but I have learned I have to be relentless in being my own advocate.
Thanks again everyone for allowing me to vent away! This forum is absolutely a god send and I hike I can contribute to anyone else's need for support!

Post Edited (Cindyt) : 9/9/2012 9:24:49 PM (GMT-6)

Posted 9/10/2012 5:06 AM (GMT 0)
I am so glad that you get to have relief tonight! I know there's nothing better than a "good" night's sleep in the hospital with medications to help. I'm sorry you've had to go through this. Hang in there! (((hugs)))
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