Long term ces

Posted , 4 users are following.

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 ?

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  • 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.

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    • 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

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    • 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.

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    • 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

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  • Posted

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