bladder removal

Life goes on after a radical cystectomy, it is just a bit different. Yes it is quite a major procedure, but the surgeons will have done loads of these, so there is no need to be to fearful. The alternative is not really a viable option longterm, assuming you have a tumour(s) that have taken hold of the bladder somehow. Best wishes for everything to go well for you. There are lots of people, like me, on here that have had this experience. So don't be afraid to ask any questions, or just seek some support. 

Hi

I had my RC five years ago, it's a bit daunting and there are readjustments, but I can honesty say that life has been fine since. I was in for 7 days and walking the day after the op. Obviously I wasn't running the 100 meters, but it is surprising how quickly you recover and adjust. I went for a stoma, as opposed to a neo bladder, as I found more convenient, but everyone has a different preference.

Try to look beyond the op and above all, try not over do things ehen you get home and get plenty of rest. Life goes on after an RC.

Hi Susb,Welcome to this friendly group.I remember being very anxious about the surgery but I got lots of help and support on here.I hope you will too.It will be 3 years at the end of Sept since my bladder was removed and I have a stoma.Is there anything in particular you are worried about ? I’m happy to help if I can.Best wishes Jane 

Hi Jane Thank you for replying my concerns are the operation of course and anything going wrong.After the operation how will I manage with a stoma can you eventually do all the things you did before the stoma .

Hi

There are risks in any operation, including having a toe nail removed. The surgeons doing the job will be very experienced and have done the job on numerous occasions. Once you are put out, you will not remember or feel a thing. 

Now with a stoma your stoma nurses will show you how to clean and change your stoma bag. You might feel a little nervous and perturbed at first, but it will become second nature. I've been doing for over five years and yes, I felt nervous about it, but you will get through it, look beyond the op.

Plenty of best wishes

Hi,I do everything I did before the op.Having a stoma shouldn’t prevent you from having a full life.I love gardening so I wondered whether I would be able to get back to it but I did.You can swim,play sport and travel.The early days post op you have to learn how to look after the stoma but the stoma nurses will show you what to do.I was able to change the bag unaided days before I left hospital.The stoma shrinks following surgery so you have to measure it to make sure the bags are a good fit to prevent leaks.After a while your stoma will settle to its eventual size.It all seems daunting at first but you soon adapt and become more confident.I still wear the same type of clothes as before but have added some tunic tops as they are comfy over the stoma.Make sure you pack something loose fitting to take into hospital.Your tummy will be a bit swollen to begin with but It will get flatter with time.It’s due to the gas they use during the surgery.It’s usual to spend a little time in Intensive care/high dependency following the op.This is because it’s major surgery.I was transferred to the ward the following lunchtime.If you can try to shuffle around afterwards that will help the bowels.There were wall rails on the ward I was on so I was able to hold onto those.We are all here to help so feel free to ask questions.Best wishes Jane 

You will get great support from the specialist Stoma nursing team in hospital, who will guide you through the bag care and change process, sending you home with ample supplies for the first couple of weeks. they will hand you on to the local team in your district.

Regarding life with a stoma, there is nothing that I have found I can't do that was normal previously, including playing full rounds of golf twice or sometimes 3 times a week. A support belt is a good idea, if you intend to do any vigourous exercise or heavy lifting, as a hernia is a possible worry.

All the special supplies and stuff like that is freely available on prescription via your GP team. The stoma team will set this up for you initially with a suitable supplier, who tend to do all the work required, once you place an order.

Sep 1 will be my anniversary - 11 years since I had my surgery. It is natural to be apprehensive, but I'm sure it won't be as bad as you fear. They will take good care of you in hospital & we'll all be here to help with any issues you have post op.  Have patience & bit by bit, you will return to doing everything again. Very best wishes.

Hi Susb

I just want to wish you all the best for your surgery this week. It’s natural to be scared, but I tried to focus on the outcome rather than the procedure. I had my bladder removed 2.5 years ago along with everything else in my pelvis so I live with 2 stomas. And I have a normal life-different but normal! 

You will need to take it very easy after your op, but things do get better in time and I can do all the things I could do before. There are lots of us who have had very good outcomes, and there will be lots of support and advice for you here. Best wishes.

Sarah xx

Best wishes for tomorrow.I hope it all goes well and you will soon be back home recovering.Let us know how you are when you can.Love and best wishes Jane xx