Bladder removal

So it's been decided that u need to have my bladder removed & this surgery us to take place very soon. For anyone else that has had this surgery, can you give me any advise as to what this surgery is like in terms of pain etc.... I'm a little bit apprehensive about it, I know I need it & definitely will have it done as its my best chance of survival, but that don't stop me from being scared x

  • Absolutely natural to be scared - it's such a big undertaking & lots of unknowns. You will probably be given an epidural just before the general anaesthetic. This will stay in place for a few days so you should be numb in the abdominal area. Immediately post op they tested me by running an ice cube down from shoulder to upper thigh! There should be no significant pain, but you will have various tubes in place which may be uncomfortable. These gradually come out over the first few hours & days. If the epidural isn't effective, or hosp has different protocol, you might have a morphine pump instead.

    When the epidural comes out, you transfer to oral painkillers. I seem to recall I was off those by about Day 10. There will be all sorts of aches, twinges, stabbing pains over the first few months as you recover & get more mobile, but shouldn't be anything too bad. The main problem at first is immense weakness & fatigue. They will get you up & walking within a day of surgery, even if it's just a slow shuffle. Life in hosp can be busy & noisy. I was quite woozy & nauseous from the anaesthetic, so didn't feel like doing much. By the time I went home after 7 nights in hosp, I was much better but still very weak & tired. You will need help at home at first - I could do all my personal care but no housework/cooking etc. 

    Just go slowly, gradually increase the walking in between lots of rest, eating little & often & plenty of fluids. Recovery can seem frustratingly slow, but you will get back to normal in time. Best wishes.

    1. Hi Rachel just read read your news. I had my bladder removed 1 year ago not the best thing to happen but my best option did not want BCG get your self as fit as possible I was back home in a week itThumbsupakes a while to get your energy levels back to normal but I am now doing all the things I use to do gardening d I y socialiing. It's a shock and worrying but you will get there a little bit of discoThumbsuport but you will be fine. My medical team were brilliant as I am sure yours are the bag is not a problem just have to dress accordingly. I wish you all the best Rachel I don't know if 72 was the yeaThumbsupyou were born or its your age I was 72 when I had my  operation. Onwards and upwards Rachel. XxThumbsup
  • I'm unable to have an epidural as I have a spinal Problem x

  • 72 was the year I was born. Thank you for your reply x

  • Hi Rachel,They will give you plenty of pain relief.I also had antibiotics via a drip at first but then by mouth.Take in loose fitting clothes as your tummy will probably be swollen to start with.I found I bled and leaked a lot so sanitary towels might be useful to pack in case this happens.It might not but better to be prepared.If you having a stoma then the stoma nurses will be there to show you what to do.They will help until you are able to manage it on your own.You will feel weak and wobbly but you should get stronger over time.You may not feel very hungry.You usually go onto a low fibre diet to help the bowels recover from the surgery.If you can try and shuffle/walk each day that should help the bowels start working.They tend to go to sleep after the op and don’t always work that well.They will give you medication to help with constipation if you are on morphine.Even with anti sickness pills I didn’t get on with morphine so I managed with regular paracetamol.I had some via a drip to begin with.It’s all a lot to take in and it’s natural to feel apprehensive.I hope our combined experience has given you a better idea of what to expect.Love Jane x

  • Hi Rachel

    My epidural failed and leaked out of my back, but I was given a morphine pump initially after surgery and pain was well managed for me. My surgery was different but included bladder removal and the main thing I experienced was extreme tiredness. All the best with your surgery-it’s natural to be scared. I was terrified! 

    Sarah xx

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  • That's helpful, thank you x

  • Wishing you good luck and a speedy recovery. Not going to share my experience, as the previous posting probsbly cover everything you need to know.Blush

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  • Hi Rachel,I was just wondering how you are after your cystectomy ? Love Jane xx