Radical cystectomy

Hello I’m quite new to the group and have my cystectomy booked for the 28th April. 
I’ve had plenty of time to discuss the Op with the consultant, the anaesthetist and my wonderful specialist nurse. However, can anyone share their first hand experience of the very early days post operative please. 
I’ve been told I’ll be in HDU for 2-3 days then onto the ward for 8 days. 
I’m obviously prepared for feeling weak and unwell but I’d rather know what to expect. 
thank you Bev 

  • Hi,I had mine in Sept 2019.I was in Intensive care for the first 14 hours and then moved to a ward.I was discharged on day 10.When you come round you will probably have a swollen abdomen but this should reduce over time.The gas used to inflate the abdomen can irritate the diaphragm causing pain at the tip of the right shoulder but this should also fade quickly.I found I leaked a lot vaginally and wished I had brought in pads.I got through so many pads and pants during my stay.In the end I was using the hospital disposable pants.Not everyone gets this though.Pack comfy clothes with a stretchy waistband so that nothing is too tight over your tummy.If you can get up and start moving around as soon as possible that will help to get your bowels working.They prescribe a low fibre diet for a while after the surgery to help the bowel recover.You may not feel that hungry.The stoma nurses will come and teach you about your stoma and help you with it.You can expect to feel weak and tired after the operation.It’s best to have someone to help you when you first come home.My sister looked after me for the first few days.By week two I was able to manage on my own but tried to avoid bending and stretching.You won’t be allowed to lift anything heavier than a kettle for the first few weeks.Try to walk/shuffle every day and build up how far you walk gradually.I started with a very slow walk a few yards up the road to the post box and back.It’s important to listen to your body.I found if I did too much I would feel sick so would rest.Don’t be suprised if you feel more emotional than usual,apparently that is common after major surgery.I spent the first few weeks watching tv,reading,drawing and doing family history.The recovery can be slow going,I felt better after 3 months but by 8 months I was able to resume caring for my disabled mother.I expect the others will be along with their experiences soon.I wish you all the best for the surgery.Let us know how you get on when you are able.There is plenty of support for you here.Love Jane xx

  • Thank you so much for replying especially the info about needing more pads and pants! 
    my daughter is an NHS sister although not surgical she’s in acute med but did reassure me the nurses will give me more than adequate pain relief. 
    I will pacK loose fitting joggers as I assumed I’d be in nighties ……. All good tips thank you x

  • Sorry my reply was a bit incoherent.I’m not with it today at all.Yes you should get plenty of pain relief.I had a morphine driver in ICU but even with anti sickness pills I was sick.I managed just on paracetamol but I think I have a high pain threshold.My sister lent me her lounge pants to wear and they were comfy.I got up and dressed virtually the whole time I was in just because it made me feel better mentally.I walked up and down the ward as much as I was able,holding onto the wall bars.I was allowed to have my mobile phone in ICU but after a day in the ward it didn’t work.I found out later it was to do with a different wi fi code.I watched tv in hospital and read/did puzzle books.I was on I.V antibiotics and these were changed to oral ones just before discharge.You will probably have clot busting injections to give yourself when you get home and compression stockings to wear.I had stents up into my kidneys and the local stoma nurses removed those,I think it was a couple of weeks later.Hopefully you will sail through with no complications.Love Jane xx

  • Thanks Jane 

    all very informative just what I needed lots of useful info x

  • I’m always happy to help if I can.I remember clearly how apprehensive I was before the surgery.The water in hospital tasted horrible and I wished I had got some juice/bottled water.I found it helpful to do the heavier household chores before the op.I knew I wouldn’t be able to manage them after it.It kept my mind off worrying.The house never looked so clean.Do you have supportive family and friends ? My sister and partner supported me.My sister stocked up on a food that was easy to eat and left out the non perishables where I could reach them.I ate mainly soup,sandwich thins with meat or cheese,I found bread too filling but cheese and biscuits were easier.Eating little and often is the key.It is likely that you will lose weight.I was told to expect to lose a stone to a stone and a half.I didn’t have any weight to lose so I was so skinny when I came home.The main recovery was during the first lockdown so I regained all the weight plus an extra 2 stone.Regular eating even if it’s just grazing and rests will help you recover.Love Jane x

  • Hi Jane 

    yes I’ve got lots of support at home with my partner my daughter and two sisters. 
    like you I’ve not got much weight to lose so will expect the weight loss. 
    thank you for all the info x

  • Hi,I hope you don’t lose too much weight and.that ieverything goes smootthly.Love Jane x

  • Winkers has given a good account. You will probably be more tired & weak than you expect at first, but day by day you will improve, although there can be dips along the way. I was just in special recovery ward for 24 hours post op, then on an ordinary ward. Frequent monitoring day & night! I had neo, so  a bit different - lots of tubes, bags & leaks. Wore hosp gowns all the time which needed frequent changes. You need footwear that is secure but easy to get on/off. My arms & legs were quite swollen for a few days. 

    Very swimmy & nauseous from the anaesthetic so didn't feel like doing much - bit of light reading. After the first day when it took 3 people to get me up (because of all the paraphernalia) I was too woozy to do any walking until the final day, then managed fine. Was sitting out of bed every day & gradually doing more. The worst day for me was when they took the epidural out, I was in a lot of pain from leaky stents. Dozed a lot!

    I could do all my personal care when I got home, but no household chores for a few weeks. By 6 weeks I was starting to resume leisure activities out of home & at 3 months a phased return to work. Was doing verything usual by about 6 months but it was 8 months before I shed end of the day fatigue. 

    Once you can eat again, try to have something every couple of hours (eg even just a few spoonfuls of custard or a biscuit) in between light meals. Concentrate on protein & carbs but anything you fancy is OK. You may be given special nutritional drinks. I kept snacking for months post op, until my weight was back to normal.

    Hope all goes smoothly for you.

  • I had mine in 2017. ICU for a day and a half and they had me out of bed after a day after the op. I didn't have any pain, well not that I can remember and I was discharged after seven days. 

    Walking is very important as it gets your bowels working, but try not to over do it, as fatigue will creep up on you before you know it. I was constipated a few days after I got home, but I was prescribed laxatives. You'll probably be given blood thiners and mine were in the form of small disposable syringes you jabbed into your limbs on rotation (almost painless). I also found I need a nap in the afternoon, but it varies.

    Overall, it takes about six months to fully recover, but recovery is gradual, so don't try and rush it and you will get back to normal. Generally, life gets back to normal with a few adaptations. Five years on and doing well.

    It doesn't matter where you go, there you are
  • Thanks so much for your encouraging positive reply. Five years post op and going well is fantastic x