Major surgery

Dear Anonymous123,

Have a look at my bio - click on my name. I had my bladder out nearly 3 years ago aged 70. Some of my cells were aggressive too and not killed off during the preop chemo. But the op got them out and here I am.

It's a long operation and takes it out of you but the end result (I have a stoma and bag) is both lifesaving and, once you get used to things, very simple to live with. Cleaning yourself and changing the bag is easy - very similar technique to changing a nappy.  

In fact there are even some positives- no more sitting on dirty toilet seats - we urinate standing up - and no more getting up several times a night - the urine collects in a night bag while I sleep.

Tell your mother it's perfectly possible to live a good life without a bladder and try not to worry.

If she'd like more info the Urostomy Association has loads of videos, articles etc all full of people of a certain age going off on holidays, swimming and climbing up mountains. There are leaflets explaining about bladder cancer on the Macmillan site too as well as a charity called I think Action on Bladder cancer. Otherwise don't Google because other sites may not be helpful.

There are many of us on here who can tell you the same.

I hope everything goes well and when you see the medics make sure they tell you exactly what they propose to do, when and why, and see if you can meet someone who has gone through the op etc.

Hope this helps. Actually I wish someone had explained things to me 3 years ago. We know how you and your Mum feel.

All the best and happy new year (I'm sure it will be once the op is done).

Latestart x

Thank you so much for taking the time to reply , this will definitely put my mums mind at rest , hearing a positive outcome from someone who has gone through it is just what she needs , it’s all very well me reassuring her and telling her it will be ok but have no idea how it must feel. 
mum has already gone through so much with repeated TURBTS and BCG that has done nothing I am 100% confident this is the best thing to do . 

im so pleased you are living a fulfilled healthy life , 

happy new year to you , wishing you a healthy 2026 

I had my surgery (had reconstruction instead of stoma) age 57. Certainly immediately post op most people are more weak and tired than they imagined. Recovery can feel slow at times - but you do get through that and back to normal life, albeit with new toilet habits. Hope all goes well for your Mum.

Hi,I needed urgent bladder removal and am doing well 6 years later.It is a big operation but it will free your mum of any bladder pain.I was suprised at how easy it was to adjust to a stoma.In my case the surgery was life saving so I regarded the stoma like that which helped.The stoma nurses should be on hand to show your mum how to care for it.Once you know what to do it becomes routine and you get more confident.The night bag is a bonus.I was getting up every few minutes each night before the op and now I can sleep through for hours.Your mum will feel exhausted and weak to start with.Energy levels pick up over time.Some days/weeks are better than others.The key is to eat little but often,keep mobile but build up walking distances and speed gradually.Your mum may need some help for the first few days when she comes home.My sister looked after me by fetching food and drinks and making sure I could get up the stairs safely.I was able to wash and dress myself but was very slow.We are all here to help support you and your mum through this.Love Jane xx

Hi Anonymous123 :-)

I had my RC @ age 76, two years ago, & can thankfully report as many here have, all clear now, & on annual checkups, sleeping through the night like a baby!

One thing nobody has referenced is the interference with the bowel when the 'Ileal Diversion' is created, in real effect, sending it 'to sleep'. It MAY take a long time to 'wake up' fully, requiring laxatives, & sometimes some physical manipulation of the cheeks to ease compaction out of the rectum. Mine finally returned to normal after about 20 months, but that's not the average I believe!

Please ensure that prescriptions for stoma & night bags are submitted at least two weeks before you run out, as the product providers aren't very good at maintaining certain stock levels, but you won't discover that until you call them to chase up the delivery :-(

Give Mum a hug from me :-)

Hi Frostie,It’s good to hear you are doing well.I was told it can take a while for the bowel to fully wake up.I had Ileus post op and needed a nasal gastric tube.It took 6 months for the bowels to get back to some kind of normality.Best wishes Jane 

Thank you so much for sharing your experience with me , the comments has definitely helped my mum and she feels a lot more positive about the surgery now  

Had my RC in Nov 24. Getting on fine with stoma, but it has taken me about a year to recover to my current state. I am NED.No regrets.

"NED"?

No evidence of disease