Urostomy bag or Neo bladder need to make my mind up quickly!!!

Hi PurpleSparkle . I went a different route so not much help but from being here for a while, the stoma option is a less complicated option than the neo. I am sure others will be along to share their experiences when they pick up your post. Best wishes.

Hi PurpleSparkle,There are pros and cons to both.Hopefully the neo bladder users will be along to explain all about this option.Neo bladder was not thought advisable for me due to the nature and location of the cancer plus an existing bladder disease.I met the stoma nurses at the local hospital.On the first visit they explained all about the surgery and I watched a video of someone changing the bag.On the next visit they measured from the waistband of my trousers where the stoma would go and marked the area with a marker pen.My stoma is on the right hand side almost level with my navel.Post op the stoma nurse showed me how to care for the stoma and change the bag.She had to change it for the first few days but after that I could manage unaided.It was harder to manage the stoma in hospital as you have all the tubes and drip stands in the way.The important thing to remember at first is that the stoma will shrink down.I have always cut out the hole in the bag for the stoma but once your stoma settles shape you can order pre cut bags.If the bag/pouch doesn’t fit snugly then you will get leaks.I’ve been really lucky and had very few leaks over the last 4 years.The best thing for me about the urostomy is not having to get up in the night.At night you fit the bag into a much larger night bag that has a long tube so you can turn over in bed.I keep mine in a bowl but you can get a stand to put the night bag on.I still wear the same clothes as before but have added tunic tops as they are comfy.You can go swimming with a stoma.I haven’t had any problems adapting to one.I look upon it as life saving which it was and I’m grateful for it.I appreciate that not everyone will find them easy.I hope this helps.Love Jane x

Thank you so much, reading this really does help, I think I'm leaning towards Urostomy. Do you think I could continue horse riding with a Urostomy bag ( once my broken leg heals of course!) x

Thanks x

There are people on the ileostomy board riding with a bag so I expect so.

Hi PurpleSparkle 

I have a urostomy, and didn’t get a choice between that and a neobladder-I was having more than my bladder removed so my situation was different.

There will be pros and cons to both options, but I am happy to have my urostomy and find it easy to manage. I understand from what I’ve read about neobladders that the urostomy is easier to deal with, especially at the start as once you’ve learned how to manage the stoma you are sorted. 

I can’t think of anything that the urostomy stops me doing-I travel abroad, go swimming, so I just think about it as going to the loo in a different way to most people! I wear the same types of clothes as I always did, don’t need to get up in the night for a wee, and in general live perfectly normally. My stoma is level with my belly button, and I’m sure I’d not have an issue horseriding if that were something I enjoyed. Good luck with your surgery whichever way you choose to go.

Sarah xx

I think that is a good way of looking at it Sarah.I remember I was concerned I wouldn’t be able to do the garden after cystectomy but I needn’t have worried.Now I am hampered by arthritis not the stoma.x

Yes, it’s other factors that hamper me in life-nothing to do with my surgery or living with stomas though! So I’m hampered by my hip stiffness more than anything else.

Sarah xx

Really helpful, thank you so much for taking the time to reply.

C x

I have neo & have replied on your other thread! Best wishes.