Iam in a flare but been taken off meds to wait OGD/Colonoscopy. Hospital blunders

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Hi Iam new to forum. I am 49yrs old and was diagnosed with UC 8 years ago. Presentation constipation, bleeding & mucus. Fatigue joint pains mouth ulcers gen unwell. Been on Mezevant 4 a day. Never been called back to hospital but visited GP over years with flares. Usually then have salofack enemas. Last year fatigue n general feeling rubbish so went to GP. Was a new GP and he suggested I should be seen by gastro. So Sept 16 went in saw a consultant and was really shocked when he informed me I didnt have UC or any IBD. Told me to do a stool sample calprotectin and he would see me 3 months but confident I didnt have UC. Obviiusly I was very confused, after all, I never wanted UC! I emailed the nurse consultant who had been involved a lot during my initial flares etc. Went to see her and she said yep it was a lresumed diagnosis but a mistake. Told me Calprotectin was normal so I dudnt have IBD. Confused. ok so what are these symptoms fatigue, joint pain, bleeding, headaches etc. She advises to stop meds immediatley and she will refer me to a consultant to look at alternative diagnosis and she insists its a particular cons i see out of the 5 avaiable. When i attend clinic 3months later( By which time i am feeling poorly , abdo pains lots of bleeding and increasing headaches). I wait an hour to then find out there has been a mix up and the consultant is on leave. I see the nurse who is apologetic arranges another appiontment and asks me to provide another sample. My Calprotectin is 1400 and my bleeding is increasingly worse. I saw the consultant 2weeks ago who starts off telling me I havent got IBD it was a misdiagnosis and i have constipation!! I ask him if he can bring up my recent results (as he obv hadnt looked). Oh dear he says forget everything Ive just said your Calprotectin is off the scale. I need to bri g you in for OGD/ Colonoscopy and biopsies. I ask him if I can now start back on meds as feel very unwell but he says no. He wants me to remain in a flare untill the biopsies are back. Iam now passing blood and diarrohea. If I pass wind (which is smells of blood) Iam having accidents. I dont know how long you usually wait for the camera but I hope its not long. 😔 Feeling sad.

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  • Posted

    Hi, That all sounds hideous, poor you, they have treated you so badly. Can I ask where you are?If you have symptoms of bleeding, prob anaemic, losing weight,  pain and diarrhoea etc you need to be careful you don't get seriousl ill. If you are passing blood and diarrhoea eg 15 times a day you could easily become very dehydrated and mal nourished. In which case go to emergency and get treated, they would put you on drips to hydrated and medicate. You can get a referral from your GP, assuming you are in UK, to get a second opinion. St Mark's London and John radcliffe Oxford are the best in UK.

    Good luck, sheila.

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    • Posted

      Hi Sheila I live in Manchester UK. No, fortunatley its not so often. Iam experiencing lots of malena smelling wind which often results in an accident. But actually going to the loo with loose stools only 4-5 times a day. Lots of pain though at mo.

      Thanks for the advice though x

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    • Posted

      Keep it in mind, my son's UC became so severe he stopped eating as pain so bad. When he went to A&E he was close to death as organs starting to shut down. You need a proper diagnosis. My son had emergency ileostomy and now an internal j pouch. Much better now xx.

      Have you looked online at Crohn's & colitis charity website and facebook pages, some useful info on there. Sheila.

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  • Posted

    Hi sounds very much like uc, i had bleeding and diarrohea and stomach cramps

    for about3 weeks before being told uc they kept telling me it was food poisoning then

    ?ibs i've had it since 2002.

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  • Posted

    Hi Aunty Vera

       I also had this problem before, now it is subsiding. I stopped certain types of food; milk (used lactose free), tea and coffee, anything with aftificial emulsifiers, and colouring in food. Give it a try. I used Mezevant also which stopped gasing within 2-3 days! Amazing. Then I stopped it. You need to find out what is the cause.


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