Neo bladder

Yes, I've had mine 14 years now. Never had an infection - some people seem more prone to that than others. can arise if neo not properly emptied. At the start, you have to expect incontinence, while neo is expanding & you learn control. Again, some find continence comes sooner than others - it can be a gradual process over months. Neos can continue to improve over the first few years. I started with mega pads changed every couple of hours, but as days & weeks went on, downsized and lasted longer. There are a few people who have issues long term.

These days I wear a liner by day just in case of the odd drop escaping if I get over full. Nights can be very different, as muscle relax and continence can be harder. You have to empty during the night - I hate using an alarm, so rely on sensation which isn't wholly reliable. So I do use a pad at night, sometimes dry, sometimes not, depends on intake during the day, quality of sleep & so on.

Are you possibly going to have one?

Thanks so much for letting me know about your experience. I know I have to have my bladder taken out. I’m terrified to be honest …the last 3 weeks have just been a whirlwind and I feel like my life has turned upside down. 
I have a meeting with my consultant next Thursday to talk about my options. Having read through your kind response and other information on line, I don’t think the neobladder is for me. I am already an emotional mess, facing chemo, a big operation and having to deal with some of the issues that have been mentioned after the op, I don’t think I could cope to bf honest :-( 
I haven’t heard Mitrofanoff mentioned a lot , so I might look into that. 
I’m really trying to be positive, as it’s an aggressive cancer but stage 2 so we have caught it before spreading, so hopefully a good prognosis after bladder removal. It’d all been a lot to take in though 

x 

Hi Lorna,It is a lot to take in.Everyone on here will help to support you through the chemo and the surgery.Are you taking someone with you on Thursday ? An extra pair of ears is helpful and it’s useful to write down any questions you may have and the answers.I hope your consultant is helpful and explains everything in detail.Best wishes for your appointment.Jane x

Yes, my husband will be there with me. Thanks Jane x

No wonder you're in such a spin, you've been pushed into a whole new world & feel out of control. Any of these decisions are a difficult when you have little idea of what they really entail. Do feel free to ask any questions here, to hear personal experiences. People are amazingly good at adapting when it's necessary - you may be surprised how well you cope when it all becomes reality.

I asked my consultant about Mitrofanoff, as I wasn't especially keen on neo or stoma from what I'd read & heard from fellow patients. He advised against, as more likely to need surgical revision in the future. BTW, I forgot to add that there is a chance with neo of needing to self catheterise to fully empty. I have to do that, but it's no problem for me.

If you are having chemo first, you have time to consider which urinary diversion you have. Sometimes there isn't an option anyway. Very best wishes.

Thanks. 
Yes, in the last 3 weeks I’ve been told that I had a clear CT scan, then told I had a small superficial tumour at the scope, then to be told I had a grade 3 MIBC at stage 2 after the TURBT which was confirmed by biopsy. 
My head is spinning and feel like I’ve been blind-sided a few times. So want to be prepared for the next consultant meeting this Thursday. 
At least it hasn’t spread to the fat layer or outside the bladder. That’s what I keep telling myself. ️

Hi Lorna,

A lot to take in but it's all doable. I knew from the moment I was going to lose my bladder that I'd go for a stoma. It's old technology but proven. Plus, I didn't want to do any training of a new bladder - its not something I felt confident about -  although lots of people adapt easily to the Neobladder/Mitrofanof.

My reasoning was I thought I'd have enough to do with learning to live without a bladder post chemo (without further things to learn). 

 I didn't spend a lot of time considering the options - at 70 I knew myself enough to choose. Haven't regretted it either. 

I also thought of what would be easier for my husband to cope with - he used to change our daughter's nappies so I knew he could deal with a stoma and bag if I needed help in future. (The whole bag change does turn out to be just the same as nappy changes, actually - lukewarm water, wash and dry  around the stoma with dry wipes  (no cream - the bag has to stick to skin). Old bag in the bin and you're done.) And the clincher for me is the nightbag - once connected up I get a good night of uninterrupted sleep.

On the issue of aggressive cells, I had a high percentage of those as against the normal cancer cells, I have never got into all this staging and grading stuff. My oncologist says they're really only for medics for decisions on what treatment and when, and I mainly left all that up to her after a proper discussion of my options, of course.

And after the op they hopefully get everything out and there's no stage or grading needed.

I'm coming up to 3 years after the op and I have been back to normal for most of that time. Yes, it's a big op - they'll tell you how to maintain as much fitness as you can during chemo. You will find your hair thins a bit but you probably won't lose it all. Take it step by step and like the rest of us you'll do fine. 

Ask anything you like, someone on here will know the answer.

All the best,

Latestart

Hi

Im 56 and super active. In my darker moments I do think how unfair this all is, having led such a clean living life!  

Im worried about how the stoma bag will affect my running, swimming and gym work. It is as it is though. 

I just have to prioritise living I suppose and to achieve that will mean a life change. 

x 

There is something called the Urostomy Association, have a look at their website and you'll see people doing all those things with a stoma. As well as climbing mountains. Someone even swam the Channel with one not so long ago (not sure if a urostomy - urine or colostomy - faeces, but the same principle). 

The key to all of it is to start rebuilding core muscles, and others, as soon as possible after the operation. There is info online about that - look for 4 Core as a start. Hospitals don't always look at that so you need to do the work yourself.

Despite my age, 69,  on diagnosis I was very fit: regular gym, Pilates and fast walks daily. That helped a lot for chemo & recovery. I had some side effects after the operation that have slowed things down but am back to strengthening my core again.

Don't worry too much, I'm sure you'll get back to normal quickly. And please don't waste too much time saying why me? Why not me?

I wasn't surprised on diagnosis, I had seen bladder cancer kill my mother, heavy smoker who left it too late to get help, in 1974. Although I immediately gave up smoking (having done it for only 5 years) and everyone said the risk was gone, 20 years of passive smoking at home, plus in public spaces until the smoking ban plus genetics, had other ideas. I've grabbed all the treatment, grateful for having choices Mum never had.

And there are people who have had stomas since childhood because of other bladder problems.

Nobody knows I have a stoma just by looking at me, and a friend who does know said the other day I look so well now that he forgets to ask how I am.

It's a different way of life and sometimes a nuisance when the bag leaks but it's all very straightforward, whichever route you choose.

All the best,

Latestart

Hi @Loubyloustffs4fd2f6

Having a stoma, once you have recovered and got used to it shouldn’t affect your normal activities. You can still run, go to the gym and go swimming. I’m disabled so can’t run or go to the gym, but I love to go swimming and I’ve got two stomas having lost my bladder and rectum due to cancer surgery. 

I am 63, but was 58 when I had my surgery-I didn’t have a choice that I would have found acceptable- so definitely prioritised living, and my surgery was life changing but lifesaving. I’m now classed as cured more than 5 years later.

Sarah xx