Fear of self catheterisation

Why do people choose stoma over neo?

Stoma is the straightforward no nonsense option, with least likelihood of complications. There is obviously a period of getting used to dealing with the stoma & bags etc but that need not interfere significantly with recovery. There is the added advantage of being able to link up to a night bag or leg bag to be able to sleep all night uninterrupted.

Compare that with a greater chance of complications with neo, potentially frustrating & tiring training period with broken nights, incontinence pads etc possibly lasting some months, all while recovering from the surgery itself. Then having to get up to empty at night evermore, plus the risk of some long term incontinence issues. 

There is no one best option, it is what each person feels comfortable with having or will suit their lifestyle best. Pros & cons to each.

I found it hard to choose, having spoken to people with one or other option, neither sounded especially attractive. The incontinence & training sounded unpleasant, but having tried a dummy stoma pack, I thought that would need emptying more often than was convenient for my long commute & demanding job. Perhaps a bit of vanity too, plus encouragement from my surgeon, led me to plump for neo. 

Thank you

It has to be whatever option is best and more suitable for you and the surgeon should discuss this before surgery.I had a chronic bladder disease I.C for over 30 years before developing cancer.Because of this the surgeon felt neo bladder was probably not in my best interest.I had already read up on the options and decided a stoma would be best anyway.It has worked out well for me.I don’t miss my bladder one bit,I was always in pain and hunting for a loo before.Whatever option you choose requires some instruction but once you know what you are doing it’s surprisingly how quickly you adapt.Best wishes Jane

Hi 

Not everyone gets a choice with it. I didn’t for example, so have a urostomy. I’m quite glad the decision was already made, but if you have a choice, then I guess you need to weigh up the pros and cons of each before coming to a decision. I’m happy with a urostomy I have to say. 

I didn’t really have a choice either Sarah.Even if neo bladder had been suitable I don’t think it would have fitted in with caring full time for mum.I’m happy with the urostomy.My local urologist asked me with hindsight would I have had the bladder removed before cancer and I said yes.Jane 

Hi Jane

I know a number of ladies who chose the neo bladder after our type of surgery and are happy with it. I don’t regret that I didn’t have this, and haven’t had any issues with my urostomy so it’s all good for me. My cancer had spread over my bladder and I knew that the bladder was stuck to my womb, when they tried another surgery, so it had to go no matter what!

Sarah xx

Hi Sarah,It is amazing what the surgeons can do.Before the cystectomy I watched a video of the robot unpeeling a grape.I’m glad your urostomy is working well,you have been through so much after such major surgery.Love Jane xx

Hi, I suffered with spinal nerve damage which left me unable to urinate on my own. I was introduced to self. Catheterisation to stop my relentless tapping of my bladder to be able to go. When I was first shown by a female nurse I was really scared, I was also introduced to an anaesthetic which you put into your penis to deaden the pain, when the tube goes into your bladder, and of course this was all done in an ultra clean environment. I have now been self catheterising for going on 30 years, the scary feeling stops, the pain is minimal  to nothing no need to use any anaesthetic, a few UTI’s along the way, you do need to be careful, but please don’t worry