Posted , 4 users are following.
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.
0 likes, 7 replies