Neo bladder vs urostomy ?

Hi Pugsy. Sorry to hear things have not worked after all you have been through. Can't help with your choice but I hope all goes well going forward. I'm sure others will be along to share experiences. Best wishes.

Hi Pugsy,I’m sorry that the last treatment didn’t work either.The urostomy surgery is more straightforward than the neo bladder.Neo bladder requires training at the start and some people do have to self catheterise.The main advantage of urostomy over neo bladder is at night.Your bag plugs into a large night bag which with luck you will only have to empty the following day.There are occasions where you may have problems with the tube draining and have to stand up or a leak.I’ve hardly had any problems in almost 5 years of having a urostomy.I’ve had very few leaks and they were nearly all at the start of having a urostomy when the stoma was changing shape.You do have to measure the stoma at the start and make sure the bag hole is cut to the right size.It sounds complicated but it’s not and once your stoma shape settles you can order pre cut bags if you prefer.There are people in the stoma group who ride so that shouldn’t be a problem.Have they said you are suitable for a neo bladder ? Not everyone is,my surgeon is an expert with neo bladders but he didn’t think it would be suitable for me.If you haven’t already discussed everything with the surgeon you should get the chance to go through the options in detail.You have been through so much in the last 3 years.I hope that once you have recovered from the surgery you will be able to get on with life.Love Jane xx

I'm female with neo. Most people are very happy with this in the long run, but initial experiences post op vary. Has your surgeon definitely said this is an option for you? 

With neo, you do have to expect issues like incontinence at first, (need to wear pads) while you stretch neo to a good size, and learn the techniques to empty. It can take weeks to months to gain good continence and you may need to keep records of intake, output & time between voids. At first you empty every couple of hours, but gradually extend the time between voids.

Nights can be harder to stay dry because muscles tend to relax - you have to get up at least once a night to empty too. Quite hard when you are recovering from the op itself. 

I rely on self cathing to fully empty, but that happens more often for females than males. Doesn't bother me at all to have to do that.  I know there are others here with neo, so I expect you will soon hear from them too. Best wishes.

Hi  Jane, having read up on both I think the urostomy will be best for me. Haven't had my consultation yet , it's next Friday so might not have a choice anyway. I know of people who've had Neo then later had urostomy so I just want this over with and hope the urostomy  will do this x 

Hi Pugsy , I'm presuming you are male. My husband had a neo bladder in 2021 be 3 yrs October 4th. He was fit enough to undergo the surgery. Lots of ups & downs,  which he will go into. But now almos 3 yrs on. It's amazing, actually 2 yrs after. I really do feel you need to speak to people who have had either & their experiences.  My husband no longer needs to  self catheterise.  Where as someoe we spoke to, still does. I do think, the bladder training etc. Is extremely important.  Not an easy ride whichever way you choose or allowed but there really is a light at the end of this enormoustunnel. My husband would be willing to speak to you on a more personal level. Its so much better to get info from people who have gone down the route of Radical cystectomy.  Much love to you ️ 

Hi, thankyou for this, I'm actually a  55 Yr old female lol i'm wanting to have something with the least recovery, and whilst I know things don't always work out the thought of having to self catheterise and train the bladder  scares me.

After 3 years of operations,turbts, different treatments , kidney removal chemo and months using a  catheter my life's been on hold long enough.  I m missing out on so much especially riding my horse. 

Despite all this I remain positive and feel lucky to still be here having a life and will listen to what my consultant and others have to say xx 

Hi Pugsy,I hope your appointment goes well.Fingers crossed you can get the cystectomy done soon and get back to riding.
Love Jane xx

Hi Pugsy my husband could have the neo bladder, yes the recovery is longer. You have to get up & pass urine every 2 hours for the first week then 4 hours etc. The idea is you don't want the new bladder to overstretch & then go floppy. You also have to self catheterise with sterile water a few times a day to start as because it comes from part of the bowel it makes a mucus, which obviously you need to get rid of. It is hard work but so worth it. . 

In October it will be 3 yrs & my husband is doing well . Good luck with whichever you decide. Xxx

Omg! I can't imagine how hard this is for a female.  Wish you well. Good luck with whatever you decide . Love to you ️ 

Hi Kimdav,It’s good to hear your husband is doing well.How many hours was his surgery ? I had a urostomy and although I was back at work 8 months later it took over a year to fully recover.I think that was because I was so ill at the time of the op which took 10 hours.Love Jane x