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Struggling to be diagnosed 😞

Posted , 6 users are following.

debbie43696
debbie43696

Been really sick since March 2017 . (Had these flare up for about 15 years )Up to 23 bowel movement a day a lot of pain and cramping .So tired , and getting depressed . Had a ct scan it showed in larger Lymph nodes , that was in Feb , Got into have the scopes done and the Dr . told me I have ulcerative colitis . I finally had a diagnosis 😊, so dr sent me to gastro specialist and today I thought I would walk out of his office with some sort of treatment plan , well o was informed my biopsy was negative for UC so now Iam back to square one and still very sick . How can one dr see it and diagnose me and then the other say No !!! Has anyone else had this happen . Iam at my wits end !!! I would appreciate any help and suggestions you may have . Thanks

1 like, 5 replies

5 Replies

  • vijay_14203
    vijay_14203 debbie43696

    Posted

    Hi Debbie

    I was recently diagnosed in may 2017, but I had lifeti gastro indigestion issues, mild flars in past years but went away so was no impact on day to day,

    Yes but this year was pretty bad flare and went bm around 10 times, thank god I am in remission now with some dietary changes.

    My biopsy showed no bacterial but had inflammation on left colon,

    Question is did you had a colonoscopy and any inflammation was reported?

    Doctors should prescribe medication to control your

    flare ( magic tab is prednisolone but pls consult your doctor)

    I am currently on prednisolone but reducing to lower

    dose slowly. Other med for inflammation I have been on mesalazinc 4g and solflax enema,

    Two months was up and down but I can see improvement.

    Diet plays a big part, when in flare till now

    No carbonated drinks, low sugar diet, low fibre,

    Just had my first coffee yesterday went ok

    Please see your doctor again if you'd are not happy consult another one, to be honest I did change my specialist after my diagnosis.

    Good luck stay strong and don't give up, eventually with proper med you will get remission

  • stephanie71259
    stephanie71259 debbie43696

    Posted

    Hi Debbie

    your experiences is nearly exactly what happened to me. Raised Lymph Nodes then a diagnosis of UC. Horrible flares put on Pentasa. However since then sometimes blood tests show inflammation and also stool sample. Then I have a flare and no inflammation shows in the blood test. Gastro doctor told me I had UC in the begininng now he goes from one thing to another. Maybe Crohns?? Then because I have some small Diveticular. Maybe Diverticular Colitis. Syg showed nothing! But I had to stop because i found it so painful. Due to have another colonoscopy but I have cancelled twice. Can't bear the thought. It was a colonoscopy and biopsies that I had for first diagnoses. So I know how you feel. At the surgery sometimes treated with anti biotics and a couple of times steroids because I was bleeding so much. I'm very confused too. I get very worried because the Pentasa has made my hair thinner. I often worry and ruminate about it. Maybe there are lots of people like us?? You want the gastro doctor to say this is exactly what's wrong and end all the speculation. 

     

  • sheila91262
    sheila91262 debbie43696

    Posted

    Hi Debbie, where in the UK are you? I would recommend top 2 places as St Marks Harrow, London and John Radcliffe Hosp Oxford. Both GI depts very experienced and totally upto date. We have experience of JRO and they were great. Good luck.
    • rachelle52846
      rachelle52846 sheila91262

      Posted

      Hi Shelia

      How are you how is your son doing ? Ive got 3 more weeks till I have my 2nd baby delivering by c section very excited but nervous then hoping all being well j pouch 6 months after how long was your sons j pouch and reversal time wise ? Thanks Rachelle x

  • kayleigh74169
    kayleigh74169 debbie43696

    Posted

    Hi Debbie, yes I am having the same problem!! Was admitted to hospital this July... fatigue, fever, abdo cramps/pain, diarrhoea, blood when passing and urgency of every 15 minutes. Was kept in and put on numberous drips and treated for diverticulitis as well as UC. Was given a colonoscopy, biopsy taken and was in for 4 days. Doctor told me that I had UC and I am now taking Octasa (4800mg a day) this is forever and then steroid Prednisolone 40mg a day reducing by 5mg a week until it finished. Was also told I would be referred to gastro and I would be seen within 6 weeks. I have had no letter from gastro, and I have tried ringing the hospital myself and I went back to one of the doctors at my surgery to ask for them to chase it up as I wasn't getting anywhere. The doctor then said I might not even have UC as they still haven't been given biopsy results?! If that's the case why am I taking the medication for it ongoing, why is colitis on my discharge papers for diagnosis and why did my doctor at the hospital say that?! Had another flare again today in absolute agony... my steroid treatment finished few days ago so today I dragged myself to see my regular doctor who put me back on steroids for it and she is going to try and chase the hospital again as I still have no appointment letter and I still haven't been seen. I don't know if I have it officially, if I don't, but if I don't then what have I got? All my symptoms fall to UC, this referral is joke! Have u had anymore luck since? 

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