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Why do I have to be so complicated,

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Ulcerative Colitis
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Posted 1/30/2013 9:18 AM (GMT 0)
Following a flare up and stint in hospital for blood transfusion was sent home after being told whatever had been making me unwell was not behaving like UC (felt like every other flare up i've ever had and responded to pred). Heard nothing for 3 weeks, local Dr wrote to another GI for 2nd opinion as I want to restart Azathioprine (made me well for 4 years why wouldn't I!) I also sent in request to view my hospital notes as numerous things happened and were said that i wasnt happy with. Well I don't know if it was due to this or just co-incidence but my first GI has just called me saying biopsies from 3 wks ago show granulomas? And now wants to do MRI to check for chrons in small intestine. From what I've been able to read you don't get granulomas with UC but my GI also said it is not diagnostic of chrons so unsure what else it could be.

I am pretty sure scan of small intestine will come back negative I believe whatever I do have is confined to my large intestine, the pain is mostly always left sided (initial diagnose was left sided UC).

He said I am providing questions to them that they can't answer. All I care about is the numerous times I'm going to the loo in the morning and they just keep telling me to keep decreasing pred. Ok vent over I'm boring myself now.
Posted 1/30/2013 1:40 PM (GMT 0)
What kind of scan are they talking about for your small bowel? Can you talk them into an MRI with contrast that will give results for the whole GI tract?
Posted 1/30/2013 1:48 PM (GMT 0)
The MRI scan (MRI Enterography) won't show mild inflammation or ulcers. Just be aware of that.
Posted 1/30/2013 10:53 PM (GMT 0)
I'm gettin an MRI and also something else which I can't remember the name of (they said dye would be injected in a vein and then pictures taken).
They said they need to check small intestine for chrons as following a large bleed that I had which landed me in hospital they need to do these tests to see if bleed came from there rather than large intestine.
Posted 1/30/2013 11:40 PM (GMT 0)
I think that sounds like a reasonable approach.
Posted 2/11/2013 10:29 AM (GMT 0)
I think the sad thing is that most of us have all most definatley had this struggle of feeling like the doctors just don't get it ? I think if they took more time to get to know us they would have a greater understanding of diagnoses etc.. I had one great GI however i had to re locate and now i am struggling to feel understood, it's horrible. I don't have much of an insight for you but i understand your frustration. Good luck getting it sorted.
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