Awaiting diagnosis

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Hi, 

I'm 38 years old, with  symptoms for around 18-24 mths. 

GP and A&E both have said they think may be Chrons disease.

Recently been having pain left upper abdominal area- made worse after eating- within around 15-20 minutes and lasts hours. 

Diarrhoea  4-5 times a day can last for days and then nothing for days.

Feeling completely shattered all the time

I have been off work now for 4 weeks- due to pain, diarrhoea and  fatigue

I have lost over 10 kg in 6 weeks.

Joint pain- which I know can be a symptom too.

I had a Ct scan last week- after going to A&E previous week in severe pain.

 Last year I had a ultrasound and endoscopy- both came back ok.

Various blood tests- which I assume are ok as I have not heard anything different.

Can anyone help with how long results take etc, anything I can do to help myself.

 

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14 Replies

  • Posted

    Had CT recently and took a month due to a backlog but was told usually about 2 weeks. Are you calprotecrin or blood test inflammation levels elevated? Usually a good place to start and gives some probability of IBD. You will get there I'm sure but it is a journey with ups and downs. Tall about the weight loss with your GP, or consultant in the meantime. They may be able to prescribe a liquid diet, or as a supplement to get extra calories in.

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  • Posted

    Hi Beth

    Sorry you've been so poorly. 

    It does all sound like Crohn's but it can be notoriously difficult to diagnose. 

    Have other things been ruled out??

    Have you been given any kind of diagnosis??

    And have you had a calprotectin test........a pooh sample......this can at least indicate if there is inflammation in the bowel specifically and rule out IBS!

    Maybe an idea to check on your results anyway. After 25 years of dealing with GP's and Consultants I've had to learn to be pro-active.  They don't always explain things very well and it's so easy to get lost in the system. 

    Last thing you feel like doing probably but only you can do it. 

    Really hope you get some answers and help soon

    Hannah

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  • Posted

    Ask for a fecal calprotectin (stool) test. This will show up any inflammation in the gut.  My bloods are usually ok as is my scans but my FC sky rockets on a flare & I had a capsule test which shows inflammation in the small bowel (where the colonoscopy can't reach). It's very hard to diagnose crohns as can be anywhere but your symptoms sound very typical of crohns. Keep on at the Drs as they do tend to palm u off.. good luck & hope u get a diagnosis soon. 

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  • Posted

    Hi Beth

    sorry to hear about what you're going through, my journey with Crohn's diagnosis was lengthy - I had similar presentation to yourself. There are new tests available now like the fecal calprotection test others have mentioned here - I just wanted to add that I don't have positive tests on either fecal calprotection or CRP in bloodtests so these are not entirely reliable. I had a fecal calprotection test in December which came back negative - by Christmas I had Crohn's sepsis due to severe inflammation in my terminal ilium. I'm about to undergo surgery for a stoma.... my point is do not let Drs fob you off with negative test results if you are experiencing symptoms significant enough to impact your daily functioning, sometimes theyneed to dig deep.

    wishing you the very best of luck - be patient but persistent x

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  • Posted

    Thanks all for your replies. I chased the CT scan results, all normal apparently. So unsure what happens next. Got to wait for a  phone call from hospital next week. Symptoms still same , still feeling rubbish and in pain. 

    Fingers crossed I get something sorted soon. 

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    • Posted

      My CT was normal hon but capsule showed severe scarring & ulceration & FC was over 600! Keep pushing as they will try & fob you off if you don't fit into the "norm" 🙄

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  • Posted

    thanks all, still no diagnosis. Saw consultant last week- been given mebeverine to try , been taking now for just over 1 week- with no improvement- not sure if I should have felt benefit yet?  more stool sample tests-, said if high  levels of inflammation will look into colonoscopy. Really need something sorted now. 
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    • Posted

      Mebeverine is a medicine for IBS. You can buy it at any pharmacy (colofac is brand name). If you have IBD that medicines not gonna help you. If you have IBS then I found buscopan to be better than meb. Hopefully they’ll get you sorted soon xx 
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