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could this be crohns?/how to get a diagnosis?

Posted , 2 users are following.

leeniepie
leeniepie

i know no one on here can tell be for definite if i have crohns disease, i just would like to know what people think, as im having a hard time getting a DR to take me seriously.

I have episodes of recurrent diarrhoea that can be anywhere from one episode in one day to 5 episodes a day for days on end. my two longest bouts of symptoms have lasted for 3-4 months (diarrhoea every day, up to 5x per day in these periods). along with the diarrhoea i get abdominal pain that can be so severe im doubled over in pain almost crying. the only thing that remotely touches the pain is cocodamol. along with these episodes comes exhaustion and nausea. with the long episodes i also have low blood pressure, fatigue, shortness of breath, joint/muscle aches and itchy eyes.

i have had stool tests for bacteria (-ve) and calprotectin level, which is sometimes normal and sometimes raised. i had a failed colonoscopy 4 years ago as they couldn't get the scope round, and so the Dr said its not worth trying again. i had a CT scan which even the radiologist said was pointless as it wouldn't show IBD.

there are some foods which can make it worse but it can also come out of nowhere, there seems to be no reason for it. I am really at my wits end with all this - i have been ill for so long

0 likes, 3 replies

3 Replies

  • jaw90561
    jaw90561 leeniepie

    Posted

    hello, i am sorry to hear of how you have been suffering.

    I too was really ill for a long time and was completely run down by the time I got diagnosed with crohns!

    your symptoms do definitely sound like the kind of symptoms that you would experience with crohns but then i do also know of people with bad IBS that experience on and off symptoms like that .

    I had numerous blood tests and stool tests done during the months leading up to my diagnosis. and every time they told me they were only slightly raised or normal. so every time I was sent back home. and yes it is the most frustrating thing when you know how much you are suffering and no one believes you or takes you seriously. I've been there! and all the while I was gradually getting worse and worse.

    what finally picked up that there was something wrong with me was a different doctor looking at my case and deciding to do an abdominal xray which showed up that my large bowel was really inflamed. I was admitted to hospital immediately and had a partial colonoscopy the next day along with ct scans, ultrasounds the lot!!

    a week later I was diagnosed with IBD and following the biopsy results from the scope they confirmed it was crohns.

    so I would suggest that perhaps you could speak to your GP and ask them if there is any chance they could book an abdo xray for you?? I had one again only recently and I was only waiting 2 weeks for the appointment....

    but otherwise don't give up, keep persisting and eventually someone new will try something different and you will get some answers 😊 all the best!!

    • leeniepie
      leeniepie jaw90561

      Posted

      thank you for your response. I will see about an x-ray. as you said, waiting time should be short for this so at least I could get it done soon

    • jaw90561
      jaw90561 leeniepie

      Posted

      yes usually they can get you an appointment quickly. or alternatively you can go to a&e and ask...

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