I wrote on here a few months ago now... I had a battle with my GP and finally got referred to a gastroenterologist who sent me for a colonoscopy, MRI scan and calprotectin stool test... I initially thought I had IBS, but wondered if I could possibly have Crohn's disease...
I fought so hard to get a referral and apparently all of my tests have come back normal. The doctor wrote there was "no signs of IBS and no evidence of IBD".
Yet... I still have an extremely localised pain in the middle right of my abdomen near my belly button which comes and goes, but I have it most days. Sometimes it's very, very intense, like someone is stabbing me over and over again. Sometimes it's a gnawing, burning pain.
I have diarrhoea which comes and goes in bouts, I'll have a week where I have diarrhoea every single day, multiple times a day. Then I'll have days where I have no diarrhoea, but my bowel movements are quite soft. I rarely have "normal" bowel movements. When I have diarrhoea, it's a very URGENT need to go to the toilet - I can't hold it. I also sometimes have visible mucus in my stool.
My diarrhoea is more apparent after eating, but sometimes I have it randomly. I get very intense cramps after eating, to which I was prescribed Mebeverine - but it didn't really help. Buscopan does not help either.
I'm always extremely tired, no matter how much I sleep. I was diagnosed with a B12 deficiency and I had 6 B12 injections in 2 weeks, and they retested my B12 after this and it was only very slightly in the normal range (I would've thought it would've been sky high from the injections!). My doctor did suspect Crohn's disease because of my B12 deficiency as B12 is absorbed in the terminal ileum (common site of Crohn's).
I suffer a lot from headaches and migraines (sometimes probably because of the amount of diarrhoea, dehydrating me).
I'm now at a loss... I don't know what to think anymore. The GP has been told to "treat me symptomatically" meaning to treat my pain, diarrhoea and cramps etc... So, what am I supposed to do? Eat painkillers and Imodium every day? I have days where I can't even get off the toilet or move from my bed, so I can't make it into work. Surely, this can't be nothing???
I'm wondering, especially the people who have been diagnosed with Crohn's, is it possible to miss Crohn's on a MRI scan? I thought MRI scans were supposed to be the "gold standard" of diagnosing this kind of IBD.
I know it sounds bad, but I'd rather be diagnosed with SOMETHING, so then I can work out what I need to do to prevent, or if there's any specific medications I can take... But, to be told nothing after 8 months, I want to cry, because my symptoms haven't gone away, they've gotten worse!
I have a follow up appointment in February with the consultant... what should I say to him? Can someone have localised abdominal pain and diarrhoea for no apparent reason?
TLDR: no diagnosis after 8 months... can Crohn's disease be missed on an MRI scan? How long did it take for you to be diagnosed? What should I do next?