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I've not been right for three years now and my doctor has diagnosed me with IBS, along with Fibromyalgia and CFS, however I'm having a really hard time convincing myself otherwise. The reason I suspect Crohn's Disease was during a routine stool test for blood, which was also tested for faecal calprotectin, no blood was present in my stool, however I had a >300 faecal calprotectin result. A follow up test a couple of weeks later produced the same result, raised calprotectin but no blood. As a result of this a colonoscopy with biopsies was booked, which I had a few months ago. The results of this were fine, the doctor doing the scope said my rectum, colon and terminal ileum looked very healthy and my biopsies came back normal, the only thing found was haemorrhoids, and as a result of this a diagnosis of IBS was confirmed.
I can't convince myself this diagnosis is correct, I still feel like there needs to be more investigations done. Generally I always feel slightly ill, I get lots of bloating and abdominal and chest pains, feel weak, drained, sometimes lightheaded. I have a bowel movement every 3 days like clockwork and it always looks normal, however there has been mucus present sometimes and I have had blood present on my stool, or on the toilet paper, although this only happens rarely.
When I questioned the diagnosis with my doctor he went through all the tests I've had done, and told me with the pleasing colonoscopy results, the fact that I'm not in more constant severe pain, illness and distress, the fact I'm not loosing weight and the normal results of all the other tests I've had done, and there has been many, he had no reason to suspect Crohn's Disease, however he could give me no reassurance as to why my faecal calprotectin results were positive, he just said it's not a definitive and quite vague test and probably just one of those things. He also then told me that during the last two and a half years I've had 12 blood tests, all looking at various things like liver function, celiac disease, autoimmune disease and HIV, but each one has had a CBC done at the same time. He then said if I am feeling ill all the time caused by Crohn's Disease, then the law of averages would suggest that at least one of my blood tests would show markers of inflammation, raised white blood cells, but I've had 12 tests that have been fine. He finally said that my symptoms do not fit typical Crohn's Disease symptoms, especially as during a day I can go from feeling ill to feeling ok in a matter of hours.
I'm sorry to have waffled on so much, but I want to be as sure as I can that I should accept this diagnosis and try to move on with my life as best as possible. I'm just wondering what any of you would do in my situation? Would you accept it, or are there other tests that I need to push for to be 100% sure?
Any thoughts, views or comments would be greatly appreciated.
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