Hi again, I have had my tests already as I was fast tracked, I have T2 bladder cancer, it hasn't traveled outside of the bladder but has reached the bladder muscle. The team have told me I will be offered either chemo with radium or radical bladder removal, if its a matter of life or death I will go for the latter, I had my turbt recently and it was a bit uncomfortable as the surgeon insisted I had no auto washer fitted to my catheter which caused the tubes to block, another doc overrode that and one was fitted result instant relief! Good luck all I will let you know how mine goes

Hi,

My dad is currently undergoing surgeries to remove the tumor. He will need to make a decision of which procedure to go for after bladder removal (urinary diversion or bladder reconstruction using intestines). My dad would really like to speak to someone that has gone through one of the procedures to help him make a better informed decision. Any advise or help you can give would be really useful.

thank you 

Hi JasminK.  Welcome to the forum.

We don't get many bladder cancer patients here.  I think they mostly hang out on a Facebook group.

It's a private group, but if they'll let me in then they'll let in anybody :)

I do know there are a number of people there who've been through this and I'm sure they'll be very helpful and supportive.

Go to https://www.facebook.com/groups/bladdercanceruk

Best wishes

T

Thank you for responding, that's really helpful.

kind regards

Jasmin

Hi, I had my bladder removed in 2014 with a urinary diversion to replace it. It has done me fine for 7 years, though I had a complication 3 years ago when I developed an intestinal hernia which obstructed the ileal conduit. So my bowel was blocked and then my kidneys shut down. All is well now (thank you NHS!). I think the bladder reconstruction alternative may involve a permanent catheter, which I didn't want. I have to wear a small bag but I am so used to it now that it makes very little difference. 

Hello Borymas. I just read your post way back in July 21 and would like to ask you how you felt after the bladder removal and the things you had to change when you got home. I will be having my bladder out in4-6 weeks time and i will be having a stoma . I am 82 and the consultant thinks i am fit enough to get through the op but i would really like to here what you have to say about it all. Do you have to go for check ups after and how far apart. Has your life changed a lot since you had it done. I am just hoping i can cope with the stoma.

Regards from Ronnie 

Hello borymas you sound full of life thankfully you will remain like that. You will be knowing how i am feeling with the news i have had wont you. It's good to be able to talk to someone that has been through it as well. Yes i have been told i will have a night bag but to be honest i will be glad of it as for 9 months i have been getting up 2-3 times a night so i will be glad of a good nights sleep. I have had one before when i had a turb so i know what to expect. The stoma will be a bag stuck to my belly. I wanted to know more about the peace of the bowl they use to make the tube to put the ureters in. Do you know anything about that ?. Did you have a lot of pain after the op and how long were you in hospital for. I drive but they say i cant for 6 week after the op is that what they told you. How come you have to have a leg bag on when you go out. The cancer nurse never mentioned that only a bag on the belly. Thanks for the info very helpful. Hope you can answer my questions and if you can remember as it is a long time ago since you had it done. Take care 

Regards from Ronnie

Hi again Ronnie

The part of the bowel which is used to make the stoma is the ileum. In my case it is the part which absorbs vitamin B12, so I have been taking sublingual B12 daily. I don't remember having much pain at all. I was in hospital for about 2 weeks.  I wasn't able to drive for several weeks, until the operation stitches had dissolved. Not everyone uses a leg bag, but I am more relaxed about going out or travelling when I have one on. I change my flange every 1.5 days, usually after a shower or a bath. I also carry a spare flange and bag when I go out, in case of a leak. You may have a different type of stoma attachment. I'd be interested to hear about it when the time comes. Good luck, and let me know how you get on. All the best, Edward (borymas)

Many thanks for getting back to me i will let you know what stoma i have when the cancer nurse tells me. Your info was just what i was wanting to know. The thing that worries me the most is the shower or bath thing. I worry about leakage as well when i am out. Like you i will get used to it i suppose. I have no choice do i. But reading your notes is very encouraging and i will keep what you say in mind. If you think of anything else  i would be most grateful

With regards from Ronnie