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For the past 6/7 years I have been told I have ‘IBS’ I have been to my GP’s several times over the years with excruciating symptoms. I can’t cope any more.
The abdominal pain and swelling is so severe, I can go from a size 10 to looking like I am about to give birth in the matter of seconds and it can last up to a 10/14 days at a time. They don’t go hand in hand, I can have both at the same time or pain without the swelling and vice versa.
I have diarrhoea/loose stools every day, they have blood and mucus in it more often than not. Sometimes it’s just purely mucus (Sorry for being so graphic).
There are days I can’t get out of bed, my body feels so heavy, this exhaustion just washes over me and I feel so unwell and weak. When I do force myself to go to work or get up I feel sick and dizzy and get so disorientated it’s like I can’t think straight. It gets so bad in work sometimes I have to go to the toilet and lie down on the floor in the cubical. Other times I go in and cry with the pain, I feel like I’m in labour.
It’s really starting to ruin my life. I have had a few ‘accidents’ over the last couple of months, now I get serious anxiety about going ANYWHERE and always carry an emergency pair of trousers and pants everywhere I go.
The doctors have told me its IBS; I have been sent to dieticians and been on every diet under the sun, Low Fodmap, Gluten free, Low Fibre, High Fibre, No lactose. I don’t smoke, drink fizzy drinks or caffeine. You name it I’ve tried it!
I had an Endoscope and colonoscopy a few years ago (Maybe 5 or 6), as far as I’m aware the Endoscope was clear and they couldn’t complete the colonoscopy (I don’t remember the reason). The symptoms have always been there but now I feel like each episode is getting worse than the last.
I have been given Buscopan, Peppermint Oil, Omeprazole, Mebeverine, none of which help the pain or swelling or relieve the symptoms. I was once referred to a gastro at the hospital and when I went to my appointment it honestly lasted no longer than 3 minutes and she sent me away with a prescription for medicine to help loosen my stools? (I never collected it, it’s the last think I need) I came out and burst into tears. I feel like I am trapped inside my own body and no one is willing to help or listen.
I have been to hospital 3 times with these symptoms, twice I was sent home with Buscopan (No tests, just an initial examination) the last time which was January of this year my GP sent me straight to hospital after taking my blood pressure and feeling my stomach, he said he couldn’t rule out a suspected appendicitis. When I got there they took blood tests and admitted me. It wasn’t an appendicitis but I was told my bloods were ‘UP’ and that I had to stay in.
There were no beds in the gastro ward and so they found me a bed in a surgical ward. Each morning when the doctors were doing their rounds I was told to fast as I was scheduled for a colonoscopy/ Endoscopy and that gastro would come down and get me. They never did, every day I was told the same thing and at around 6 o’clock each night I was told that actually gastro were really busy and that I would get my tests the next day (I never did).
Since I was admitted I was told to hand my stools each time I went to the toilet so they could send them away for testing. There was of course blood and mucus in it (which is completely normal for me).
There was one surgeon that kept checking in on me while I was in, he told me that my history and symptoms along with my blood and stool samples made him think I had Crohn’s Disease but that I was a gastro case - he would constantly tell the nurse to call up stairs and let them now I was still here waiting. This is going to sound strange but I honestly felt so happy, like for the first time I finally had an answer for everything that was wrong….However L
After spending 5 days on the surgical ward a gastro doctor came and seen me for the first time and I told me that I actually had food poisoning and that I was being discharged. How is that possible??? It was the same symptoms that I get over and over, surly I can’t be getting food poisoning constantly…Can I????!! I burst into tears when she said this and actually asked her if It was possible to keep getting food poisoning. Her reply was that yes it is possible to keep getting campylobacter if you have HIV? I was so stunned, so she took blood and told me she would send for a HIV test and off I went. (I don’t have HIV fyi).
My discharge letter said I was admitted with a CRP count of 98 and abdominal pain and swelling and that if symptoms reoccur within 2 months I was to go back to my doctor. I did this and she referred me back to the gastro at the hospital again, and took more bloods. I was called a few days later to let me know my blood tests showed that I have a vitamin D deficiency but still don’t have the gastro appointment yet?
Its ruining my relationship, my career, and by everyday life. I have no idea what I can do. The first time I ever heard of Crohn’s was when the surgeon mentioned it at the hospital and since then I have read up on it. To be honest I am convinced I have it. I can relate to other sufferers symptoms and flare ups. BUT on the other hand I’m not a doctor! Is it just IBS, is it food poisoning? It’s came to the point that hate going to my doctor I feel like a nuisance. I can’t believe no one has suggested Crohn’s before. Or is there a test to completely rule it out, as this could have been done via the blood tests, maybe, which is why they haven’t mentioned it?? I honestly don’t know.
I am sick again and have been off work for 4 days because of all the symptoms I have described. I guess I am writing this for some advice and to half vent. Sorry for the long post but I really am at my witts end.
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