Not giving me MRI

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Hi all,

I still haven't been properly diagnosed and its very frustrating. I don't have any symptoms so I'm happy to wait but i was told I don't need an MRI. I had Colonoscopy and they couldn't visualise terminal iieum although I have inflammation the mouth of the terminal iieum and erythema and ileocaecal valve. If they couldn't visualise the terminal iieum shouldn't I be having an MRI? I was told its possibly crohns but there not 100% so its now been referred to the ibd clinic to decide whether it's crohns. She also said people with crohns usually have symptoms of going to the loo over 4 times a day and stomach cramps. I don't get anything. She said it cld be infection but my stool sample ruled out infection. Why is it so difficult to get a diagnosis?

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  • Posted

    I can tell you that IBD is super frustraiting. It can present symptoms at times, but there may be no evidence of it from a clinical stand point. I have what they call IBD at times and they call it UC due to where it is, but I have symptoms of Crohn's disease. I now have new symptoms that have taken years to show up. I have issues with absorption. I am losing weight and I have low Vitamin D, B12, Protein and Potassium. Those things never happen with UC. They even couldn't identify the disease that was in my transverse colon, they called it IBD, but becasue I have disease that is more pronounced in my rectum they call it UC or ulcerative colitis. I know that I have CD, due to symptoms that I have had for years. Most people with it will go the bathroom several times per day. I am on prescription medicines that stop me up, so I seldom have more than one bowel movement per day. It has to be really bad for me to get that loose. I am affraid that it will have to progress and get bad in you before you will get a diagnosis, because the evidence isn't there, just like me. I had to get so sick that I went to the hospital, then they scheduled me for the colonoscopy. I was bad enough at the time for them to make an unaccurate diagnosis of UC. Not sure how they came to that conclusion, but my doctor at the time said that my symptoms didn't match the diagnosis. He said it makes more sense for CD, but until they get involvement that they can see in the small bowel they always seem to call it UC. So when some get their colon removed due to damage or cancer, they find out they had CD all along as the disease sets up shop in their small bowel after the colon is gone. This is due to unaccurate diagnosis from the pathologist looking at the slide and can also be due to the Gastro, not taking samples where the disease is at its worst. Some have a hard time telling as the tissue can still look normal with the scope and it isn't until the samples are sent in do they see IBD present. Despite what my current doctor says I know that I have CD, you don't get low on nutrienets from UC, now it is possible that it has caused inflammation some where else and in turn is leading to poor absoption in me, like the pancreas. Not sure, I am not a doctor, but my point is that it is super difficult to get an accurate diagnosis with this disease. One has to be super sick for it to happen. I doubt an MRI will show much, if anything, so it would be a waste of time and money. If you have it, believe me it will get worse and you will get a diagnosis. Hang in there, be happy it isn't bad.

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    • Posted

      Hi Craig. Thanks for your reply. You could have crohns colitis? That's wat the endoscopist said I could have. That's terrible for it to get bad before getting a diagnosis. So I have all this to look forward to :-( Iso im a ticking bomb lol

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  • Posted

    Hi,  I have been diagnosed with Ulcerative Colitus.  I had 2 nearly 3 months of very loose motions and I was scared to go to Doctors for fear of what I would hear. I plucked up the courage, he asked me for a stool sample, no infection found sent me to hospital who booked me in for a colonoscopy.  I had no other tests and my Consultant confirmed what he found and gave me a copy of the printout as to what and where it was found.  Put on steriods then azathioprine and Pentasa.  After about 9 months he took me of Steriods and put me on azathioprine and Pentasa.  4 years later I am now off azathioprine and only taking Pentasa.  I can assure you that you do suffer severe symptons with Ulcerative Colitus and you can suffer fluctuations in nutrients especially when you can't keep anything in at all.  I hope you get some answers soon because it is a very worrying time.  Good luck.

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    • Posted

      Hi Maureen thanka for reply. Tbh I think I would rather have UC than crohns. There is a cure but unfortunately a very extreme one. I haven't got any pain "yet". They say people live a normal life with crones but that's not true if your in pain all the time. I'll just see wat they say next week.

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