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Advice mouth sores/ NHS specialist waiting times...

Posted , 3 users are following.

Jules1977
Jules1977

Hello, I'm getting pretty fed up was referred to the IBD specialist department at my local NHS hospital 4 months ago- and still waiting to be seen- although next week I have my appointment.

The thing is I now have a really inflamed mouth- looked with a torch and there a lot's of sore on the inside top of my mouth- small and white, mouth is so inflamed I can't actually eat anything- looks inflamed at the back of my throat as well. . And I have sore eyes 😦 Thought in November the painful eyes was due to a lack of vitamins but now think it might be to do with this condition. Any advice for mouth inflammation- before I get to see a specialist next week?

End of last year I had a 6 cm pelvic abscess, caused some form of by IBD (yet to be diagnosed though very like Crohns), and lost 6 kgs in about 3 weeks. I was so sick and inflammation was so bad I had to ware a nappies for a week as I lost complete control of my bowels. Got better again, but Christmas was difficult as well , because I attempted to eat what everyone else was and got stomach pains, had to go to bed-etc.

This is a questions for people based in the UK: once diagnosed does it take so long to see a specialist on the NHS for example during a flare up? Have been waiting since September so still haven't had a colonoscopy (though I did have an MRI of my bowel and stomach- which detected the abscess, as well as a thickening in the walls of my bowl and terminal ileum). The MRI was done by a general surgeon- but because of the complications of the IBD causing an abscess in my bowel/pelvic wall he said the colonoscopy would be too complicated to do in a day hospital so discharged me and referred me back to my GP- hence the long wait 😦. .. (Abscess was treated in the emergency dept- with loads of antibiotics so at least that's under control- down from 6cm to 2cm was treated in the gynaecological dept, because in pelvis- but even they said I really need to be seen urgently in the gastronomical dept to get assessed as seems inflammation spread from bowels to pelvis and caused abscess).

0 likes, 3 replies

3 Replies

  • tiacymru
    tiacymru Jules1977

    Posted

    It is really difficult getting to the bottom of what is going on and even when it is done each flare up seems to bring something else with it.

    The hardest bit for me was the diagnosis and since then the gp, consultant and IBD nurses have been amazing. I never wait longer than 2 days for the IBD team to ring me back.

    Keep going- this is the hard bit but you will get there.

  • Jules1977
    Jules1977

    Posted

    Thanks for the response. Have seen a specialist now, he is keen to do a colonoscopy, but needs to make sure the abcess has gone first. So having another MRI first. ( no medication prior to symptoms)..

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