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Long term ces

Posted , 4 users are following.

dan_15470
dan_15470

I've had ces for 16 years I go for cystoscopy yearly check for bladder cancer as I heard long term use of intermittent catheter increases risk ?

What annoys me most is the uncomfortable sensation when sitting for any more than 5 mins even on a padded chair and lying in bed on my back. The backside sensation is horrible and I wouldn't wish on my worst enemy but I never hear others talk about this ?

1 like, 12 replies

12 Replies

  • donal03912
    donal03912 dan_15470

    Posted

    I know exactly what you mean, though it’s hard to describe the sensation 
    • dan_15470
      dan_15470 donal03912

      Posted

      Yes really hard to describe? Feels like bruising but not or just dull aching? Very weird

      Thanks for your reply btw my name Dan is Donal in Irish! Are you Irish ?

  • keith94082
    keith94082 dan_15470

    Posted

    I used to suffer with this but I had a subpubic catheter for 18 month it got so bad with in fections I hat to have a ileal conduit wee stoma and a bag they left my bladder in but that at to be removed 5monthes later. I also have a colostomy bag. To cut it all short I was left in compression for 6 days. I have been left with mobility issues and I suffer so much nerve pain. I have been told I am the worst case of ces in this country. I was paid a large amount of compensation. I have had other things which I would not have got 3different types of major hernia operation I have had a colostomy revision and it's gone bad on top of the stoma again I am a waiting major surgery again. I have been put forward for a thing called Nero modulation I have had the 2week assessment. So it will be soon to go a head with this it was held up as I had upper back surgery 3discu c5 6 7 I had spacers plates and 2 cages. My discs had gone. I have had 10 major operation 9directly from being left in compression.

    So I read about all the pain and I know what everyone is feeling numbness then water walking on pebbles is the worst one. So many things. If I was u if the feeling with u bladder is that bad get a permanent bag. Leave the badder in normally it just sits there It can go bad I felt it was like burning they admitted me took it out and prostrate go's as well u need ur prostrate for erecting. That did not bother me as I had lost feeling their. Its just a basic online but I have established ces. I have cares I was fit active then this and if I was treated I would be near normal. 10years of hell nearly 2spent in hospital.. Hope u read this and others don't let up this nhs trust just paid up all my cost the lot I was taking a urologist from a private hospital he never spotted the red flags. The NHS. Are getting him to pay half.

    • dan_15470
      dan_15470 keith94082

      Posted

      Oh dear that sounds a nightmare mate

      The gp told me not to get supra puBic as I am able to use my hands well and am mobile I might do though as sometimes it gets worse going in urethra but I have little feeling there

      I never got compensation as it was my fault abroad I fell and no insurance

    • donal03912
      donal03912 keith94082

      Posted

      I say a prayer for you . I can’t imagine what your going through 
    • keith94082
      keith94082 donal03912

      Posted

      I wake every night its the back pain. My back is a mass they are saying about putting rods in. At present when I stand it feels like I have been it in the lower back. They said I suffered extreme nerve damage to lose my bowel and bladder. When the surgeon said I would need a lot of help he was right. But it's all these unexpected things like the hernias the revision of the colostomy area they are all massive cuts up the middle. I have a foot long scar no real belly button.. As I lay in my bed now I am in pain. So I feel for anyone that as any type of back pain. I had good solicitors and barristers and experts the expert in

      a and e procedures he was the one they failed me at every level even when the admitted me they left me for 2day before they done a mir scan. By then I was to far gone. They paid me 1.1 million and I never got a we are sorry letter. I miss my old life 10years of pain. I am 60 now and find things hard. But I have never give in.

    • dan_15470
      dan_15470 keith94082

      Posted

      That's terrible and negligent 2 days without mri scan ! They say get it within 24 hrs or earlier to do least damage

      😯

      My accident was in Slovakia I was an English teacher there I fell from low balcony 2 floors onto concrete I don't know how I survived when in hospital the nurses lifted me on a sheet o change my bed it was agony I begged them not to Do it but they did ? I think I got worse injuries then

      I had operation but my bladder and bowels are useless I get back pain as well

      I feel bad for you

  • barney_44451
    barney_44451 dan_15470

    Posted

    Dan, I have had CS for 15 years I have terrible saddle anesthesia pain too. What are you taking for your pain?
    • donal03912
      donal03912 barney_44451

      Posted

      I take lyrica and amnetryptyline. Affects memory. I have had pain blocking injections but they last about a month 
    • barney_44451
      barney_44451 donal03912

      Posted

      Thanks for the reply. Question though. Which one is causing memory issues. Lyrica or amnetryptyline? Also are you taking opiates too? Which ones. Thanks for your help!!
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