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Urostomy 12 weeks ago and still got lots of vile discharge?!

Posted , 5 users are following.

audigem
audigem

Hi all,

I had my full bladder removal with partial urethra removal on 9th January this year due to having severe ic and my bladder was just riddled with ulcers so had to come out. I had a spc in at the time as my bladder was paralyzed from having Botox injections into it a year before. I also have a rare disease called Fowler's syndrome which affects only women and causes UTI like symptoms in the urethra and the pelvis and also causes severe pain and incontinence issues. It's a truly debilitating disease as it's like a thousand times worse than a UTI but there is no cure and not enough research for any successful treatments to help enough. Anyway, after having my bladder out I had discharge from my urethra obviously but 12 weeks on and I still have the same stuff, with the same consistency and colour and the rancid smell which I can only describe as a hospital smell with quite a strong not acid but just horrible stink. Exactly the same as it did when I first had surgery. I already been doctors and they not interested. I'm not well enough to keep chasing them.

Has anyone else experienced this? I get so much pain in my tummy right under my incision as well and through my pubic bone.

Thanks

0 likes, 3 replies

3 Replies

  • lynn41704
    lynn41704 audigem

    Posted

    It really doesn't seem right to have problems 12 weeks after the procedure.  I think you should go back to the doctor and make them listen, take someone with you for moral support if necessary.  Have you got a follow-up appointment at the hospital? You could also phone the ward at the hospital where you had your op and tell them your symptoms and that your doctor is not interested.  If all else fails go to Accident and Emergency (phone an Ambulance if the pain is really bad) and tell them exactly what has been going on.  You really need to get this sorted. Best wishes and take care of yourself.

  • sam6990
    sam6990 audigem

    Posted

    Oh you poor soul!! My heart truly goes out to you. I have recently been diagnosed with Fowlers disease and it is certainly a painful condition. I thought Having the bladder removed would stop all the pain, but obviously in your case not. Whenever my embedded infection rears its ugly head, the pain can be so bad, that I really want to die. It can leave me requiring entinox or something similar for the pain. How bad was the operation? Was there high risk of problems? How are you re designed to pass urine? If you would like, please message me privately.

    Take care

    Sam x

  • Therapy_girl
    Therapy_girl audigem

    Posted

    My heart goes out to you to be in such pain and unable to get satisfactory help from the professionals whose job it is to help you no matter what. I would keep a diary and put the time in so if you wake up in pain at night enter the time. I agree with the advice given to you already keep going to your doctor or consultant be a nuisance. Give them copies of your diary let them read what you are going through. I wish you all the luck and sincerely wish you better or lots of improvement. Love Therapy girl
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