Bladder removal

Hello Wilson73 . Not had this procedure myself, but just let me welcome you to the group. Several members here have experience of this and I am sure will be along to help. I hope all goes well with mum. Best wishes.

Hello wilson73 and welcome 

I had my bladder removed at the end of February this year. As the consultants will make you aware this is major surgery with an extensive recovery period. I now have a stoma which replaced my bladder and iam living with it quite happily. It does require some lifestyle changes but overall my quality of life has not changed much.

Your mother will be given all information and practical advice about changing the stoma bag ( iam assuming that this the course she is taking rather than a neo bladder) while in hospital. The fact that you are looking after her is a plus. Recovery can be long and assistance is required for a while post op. 

I know it's difficult not to be overwhelmed I was myself when I was told I had to have the operation but it quite manageable. There is nothing to fear from this operation or post op lifestyle. 

Please let us know closer to the time when the members here will give you all the advice for hospital and post op support. 

Best wishes 

Mark

Hello Wilson73,Welcome to the group.I was T3b too and had bladder removal nearly 6 years ago.

It is a big operation and recovery can take a few months but as Mark says it is manageable.

I was very unwell and in pain pre op and felt so much better once the bladder came out.I hope your mum will feel the same.

Your mum will feel very tired after the surgery but over time energy levels do pick up.

It’s best to rest and eat little but often.Build up walking distances gradually.

Please feel free to ask any questions as there are several of us on here managing good lives post cystectomy.

It’s natural to feel overwhelmed but we are all here to help and offer support and advice.

Best wishes Jane 

If your Mum was fit and healthy recently, that will stand her in good stead for the surgery & recovery. She will be in hospital a few days to a week (depending if robotic or open surgery) minimum. Initially she will feel extremely weak and tired, will do little more than sit and rest, but it is important to gradually build up walking (even if a slow shuffle) a little more each day. Best not to push too hard, just go at the pace body dictates - full recovery takes months, not weeks. 

There are various different issues that can complicate recovery, but feel free to ask here if anything crops up, rather than worry about what might or might not happen. Best wishes.

Thanks everyone it is really helpful to hear from people who have actually gone through this. It gives me a glimmer of hope that mum can do it. I will keep you updated as I hear more. 

Hi Wilson73,

As others have said this is a major operation but once it is done and one recovers a bit then it's perfectly possible to live a good healthy life afterwards. I have a stoma and use stoma bags quite happily. No one ever notices and because I have worked quite hard on it, I am fit (though not quite as I was) and healthy. I was 69 at diagnosis and 70 when they operated, just over 2.5 years ago.

The chemo pre-op was tiring by the end (I had 4 cycles, 2 weeks on, 1 off) and I did need looking after during that. Even then the hospital encouraged me to exercise - I kept walking as much as I could. But wish now I had pushed harder on my pilates. A good core helps one recover and avoid hernia after they make a stoma. I had a robotic operation so they make several smaller incisions rather than one large one. The others have healed quickly  as did the stoma.

I'm sorry your mother feels unwell, as soon as I came round from the op I felt better - probably relieved it was all over - and this helped me recover quickly. I did push on that, listening to my body of course (rather than my mind which would have preferred that I lay in bed or sat in the chair). 

The hospital gave me some gentle exercises for after the operation and I started them when I got them and just carried on after they let me out of my chair. 

It helped me to exert myself that my husband (who we expected to be my carer) became ill just after my operation and needed a bypass. Open heart operations and drugs are more exhausting post op I found.

We needed help of course: a little from a  carer for him for a week but mostly from our daughter and son in law who moved in for a number of weeks. That helped us get much better more quickly (and set their minds at rest) so we were back to normal sooner than expected. He is now 81 and like me walking a lot, cooking and even had a knee replacement last year, which he sailed through. 

I hope this helps give you confidence that your mother can get through this (and so can you). Try and be cheerful both of you, worries weigh you down and cure nothing. Once through the operation things will improve. 

All the best,

Latestart

Hi. My husband (73) is due to have bladder removal op in September.  Obviously distressed about having a “bag”.  Any advice on what to expect post surgery and also anything i can do to help him to readjust to his life post op?  We play racquet sports 4 times a week and he is keen to continue with this post op but is also worried about swimming and going on holiday.  We travel quite a lot so any advice on taking supplies when going away and also support immediately after leaving hospital.  You are all wonderful and i would really appreciate any advice for me (as his partner) or my husband.  Thank you for taking the time to read this.

Hi Pilar44,Welcome to this friendly group.Your husband will be able to swim and travel once he has recovered.People horse ride and play golf with stomas so I imagine racquet sports will be fine.As you will read on here there are several of us living well with a bag.If your husband can get as fit as possible before surgery that will help.Post op your husband will feel tired.He may not feel very hungry so it’s best to eat little but often.Plenty of rest but some walking/shuffling each day too.Build up walking distances gradually.Recovery takes months but over time energy levels pick up.Support post op varies.I didn’t get any from my gp so can’t really help there but this group were amazingly helpful.Your husband’s stoma nurses will be able to advise him on supplies.It is a big operation but stick with us and we will all help and support you both pre and post op.Best wishes Jane x

Thank you Jane. It is very daunting for both of us. A neighbour came to talk to us about his experience but he opted for a neo bladder. To be honest after listening to what he went through my husband said he was relieved he had decided to go for the “bag”. I’m sure we will be relying on this fantastic group for support post op. I really appreciate your time and feedback x

Pillar 44

Jane is absolutely right in what she says. It's a major operation and recovery time is long. I was training to be a gym instructor before my cancer and operation which I had in February this year and iam still not back to the gym. I feel that I could go but I don't want to push things too far. It's a mistake to rush things patience is a virtue.

The stoma as your probably aware is made from part of the bowels. The bowels will take quite a while to recover from this. It's important when he's in hospital to get the bowels moving they are reluctant to let people home who haven't been to the toilet with a bowel movement. My bowels are still playing up from time to time.

The stoma and bag become part of your life they arw with you 24/7. It will take time to adjust. When I first got home from hospital it took me about 20 mins to change the bag mostly through apprehension and fear to touch the stoma in case it fell off. This will all change over time as confidence grows. Now it less than five minutes 

Stick with the group and we'll give you plenty of advice nearer the operation time.

Best wishes 

Mark