Chronic Bladder Haematuria caused by Radiation Cystitis.

Hi Kitt80,Welcome to our supportive group.I’m so sorry your bladder is causing problems.There are a few of us here with urostomies.
I had bladder removal 5 yrs ago and had a urostomy.I am living happily with a stoma and bladder pain free after over 30 years of chronic bladder disease prior to cancer.Are they able to remove your bladder as that would free you of pain ? Feel free to ask any questions as we are all here to help.Best wishes Jane 

Dear Kitt80,

I had a urinary diversion after removal of bladder for muscle-invasive cancer nearly 2 years ago and a urostomy. I'm pleased I had it done - and chose the stoma rather than a neobladder (internal pouch) as I didn't fancy the latter.

Stoma bags aren't hard to deal with and are delivered via companies who get the appropriate prescription from your GP. The hospital stoma nurse does the original requirement and your local nurse takes over and deals with any changes needed eg the stoma usually becomes smaller as it settles down.  You attach a night bag while in bed so you get an uninterrupted night's sleep. Used bags go into household rubbish.

Others on the forum have neobladders I know.

Quality of life after the op rapidly improves and after 6 months or so I felt as if back to normal. 

There is a urostomy association that  exists to support us if you would like more information. 

Hope this helps,

Latestart (female, 72)

Many Thanks for your reply which was most helpful.

Many Thanks for your help.

The stoma is fairly easy to live with.It’s not difficult to clean the area or change the bag once you know what you are doing.I found it hardest to manage in hospital but mainly because of all the excess tubes and drip stand.I had to be able to change the bag unaided before allowed home which I managed.Having a night bag at night is where a stoma has the advantage over neo bladder.Both neo bladder and Ileal conduit work well for most people.Being able to sleep through the night without getting up for the bathroom is a plus.Before the surgery I was getting up every few minutes and was totally exhausted.Best wishes Jane