Newly Diagnosed: Any women in this group who can provide info on Neobladder vs Removal of Bladder with Stoma

Hi Das there are some lovely and very knowledgeable women who are part of the group and you will get the information your looking for here 

Ste 

Hi Das,I had a cystectomy in 2019.I wasn’t suitable for a neo bladder.My surgeon was worried that there might be re occurrence in another area.Also the location of the tumour and a pre existing chronic bladder condition I.C  made stoma the only option.I really haven’t had any problems living with the stoma.Prior to cancer I was always having to look for a loo and in terrible pain so life without a bladder is better.Once you are shown how to care for it you quickly adapt to it.Changing the bag doesn’t take long and it’s easy to empty when you are out.I had a rarer type of cancer that was advanced and aggressive.I’m currently cancer free.It is good to be able to sleep through the night without constant loo trips.At night the day bag plugs into a much larger night bag.This has long plastic tubing so you can turn in bed.I have only had a handful of leaks and they were nearly all at the start of having a stoma.The stoma nurses help choosing products that they think will be suitable.We are all different shapes and sizes and stomas can vary.Some are flatter than others and may require more products to use with them to prevent leaks.I hope this helps.Jane 

Hi Das 

I had my bladder removed in 2020, as part of a much larger surgery so my situation is a little different. Because of the type of surgery I was having, a neobladder wasn’t an option so I have a urostomy.

I find it easy to deal with, and I wouldn’t say I look on it negatively. I don’t have any issues with my urostomy, it’s easy to manage and I have never experienced any complications with it. I like not having to get up in the night for a wee, and I can do any activities like swimming for example, as before. A neobladder is different in that you need to “train” it. With the urostomy, it’s working immediately following surgery. 

I consider my experience good as I am still here more than 4 years later! 

Sarah xx

Thank you.

Jan

Thank you so much for sharing your story and experience. Your information has been very helpful thank you again.

Sarah

Thank you for sharing your story and also explaining the differences. Am glad things have gone well for you - it provides me with some hope. Thanks again.

We do have some ladies who have had neo bladders so hopefully they will be along to share their experience.It is a big operation and recovery can be slow but you can lead a full life once you are better.Jane 

Thanks Jane I do hope so. Have read lots of info but harder to find that many ladies who have had experience.

Morning. I had a radical cystectomy in January 23. I had the option to have either. I’d never heard of a neobladder before id  seen my consultant. He thought because of my age and suitability he thought this was my best option, but until the actual operation took place and depending of how things went during it, I was still measured/marked up for a stoma right before the surgery. 
it’s a slow recovery and everyone is different and this very different for everyone so keep this in mind. My urology team are fantastic they are there to help with which ever you decide and talk you through any questions you have. You will come home with a catheter in and will have to regularly flush out your new bladder. As it’s made from your small intestine it secretes mucus which is why you need to flush it out as it causes blockages. This is only while you have the catheter in and the new bladder heals. However the mucus will always be present it’s just that when you go to the toilet yourself it will come out naturally. 

You will  no longer get the sensation to go to the toilet. I get a heavy/fullness feeling when I need to empty. Early days I did leak a tiny but only during the night. You do need to get up during the night to empty. I’m only up once now as I watch what I drink later in the day. To empty you have to use your stomach muscles, to make sure it’s completely empty I self catheterise before bed and in the morning.  Some days I struggle to empty properly so I carry catheters with me everywhere I go but don’t be alarmed they are only small about the size of a mascara so easy to pop in your handbag  I find I’m going every 3/4 hours just depends how much you drink I suppose. Again this will probably be the same with a stoma  

I'm not going to lie and you have to go what’s right for you things are tough in the beginning but I suppose it’s the same getting used to a stoma. It’s all the small details of knowing what to expect. I found this forum great for that. And knowing there are other women that have had this procedure done is peace of mind knowing you can ask them anything. 

If there’s anything else you want to ask please feel free. I wish I’d written down my experience from start to finish to complete a guide for other women to compare their experiences.

Hope with what ever you decide it goes well and remember there’s always someone on here to ask and questions you have.

Dewdrop

Thank you so very much for your honesty. It is so helpful to know. I am still in the early stages so I may come back to you once I know my treatment pathway. 

Good point you mentioned re writing things down. I did think about getting a brand new note book but to be honest still a little scared to commit pen to paper BUT I am hoping come the weekend I do at least put some dates/key points down because as you say could be useful for others in the community.  Thank you again!