Squamous cell carcinoma

Hi Jane

I’ll tag BrianO and hope that helps him see your post.

Sarah xx

Thank you, the MDT are meeting today for me with the bladder removal what are the restrictions (like amount of liquid, can I have the odd G&T) is the new one quite discreet?

regards

Hi BrianO 

i had my bladder removed in 2020, and have a urostomy. I don’t have any restrictions on the amount of liquid I drink and I certainly have a tipple from time to time! Are you having a urostomy formed, where the bag sits on your tummy to collect urine, or a neo bladder, where the newly formed bladder is inside your body? The two types are quite different to manage. 

I hope you’ll hear back soon from the mdt and get your plan in place.

Sarah xx

Hi BrianO,I have a stoma and there are no restrictions on what you can drink.If you drink a lot you will have more trips to empty the bag but that doesn’t  take long.You will know more after the MDT meeting.I hope you have some support at home ? This is a helpful group feel free to ask any questions.We all know how daunting it feels when newly diagnosed.Love Jane xx

Thank you. I think if I get these options I’d go for the one inside the body (initial thoughts)

where’s the best place to get info on both?

The urostomy pouches/bags can vary in size depending on what make you have.My urostomy is about level with my navel a few inches over on the right hand side.I think it’s hard to tell when people have stoma’s.My partner’s father had an ileostomy and I would never have guessed.Because of an existing chronic bladder disease neo bladder was not thought suitable for me but I had already decided on a Ileal conduit anyway.

This group has people with both so if you search through the posts, people will have given their views on how they have found each.

Jane and I didn’t get a choice, so we both have the urostomy, but both manage well with it. Others love their neobladder. You’ll get a range of views in the group which you can read through. 

Sarah xx

I expect you will get an appointment with the surgeon who will go through your options if you have any.Neo bladder is a bit more complex and requires training.Hopefully you will be suitable for this.

Thank you all this info is reassuring and helpful

Thank you, this is so useful… the more info I get the less daunting things are