Wessex Bladder Cancer Support
TIPS for LIVING WITH A NEO-BLADDER
First let me start with why I decided to opt for a neo-bladder. There were a number of factors I took into consideration after my diagnosis and subsequently being informed that surgery was necessary.
I, like many others before me, scoured the internet for all I could find and this was when I discovered the 'choice' between a stoma and a neo-bladder.
Prior to my surgery I joined a local bladder cancer support group in Reading. This enable me to speak to others who had a neo-bladder. I also have a friend who has a stoma and he showed me all of his equipment and talked about the ups and downs of life with a stoma.
But one of the paramount reasons for opting for a neo-bladder rather than a stoma was that my wife and I are keen cyclists, and I found that the thought of cycling with a stoma impossible to contemplate, although I knew it was quite feasible.
Following discharge from hospital, little in the way of equipment is required. However it is necessary to do regular pelvic floor exercises in order to gain as much bladder control as possible. These should be done both pre and post operation. After the operation I had a catheter for 10 days. When this was removed I needed to use incontinence pads during the day. Initially, it seemed as if my continence would never improve, but, slowly, it did. I began using fairly heavy duty pads, but with time you may be lucky enough to not need any. However, after 18 months I use minimal incontinence shields just in case.
Following the operation I was advised to wear a 'Medical Alert' Bracelet so that in the event of an accident or other medical problem, doctors would be aware that I have a neo-bladder. In the early days, you may notice that your urine contains some mucus. This is quite normal and may improve over time.
I understand that some people develop reasonable night time bladder control and by setting an alarm every 3 hours or so can get by without using any equipment. This course of action was not for me as I felt an alarm was too imtrusive. Thus, I use a urinary sheath which I change nightly (Various makes are available - I use a conveen- available from most equipment suppliers) They are available in different sizes. Careful shaving/trimming around the pubic hair will minimise discomfort from trapped hair. Initially I had a few mishaps with the conveen coming adrift during the night, but then I discovered 'Prep Wipes' which help with extra adhesive.
Night Bag: I use a 1Ltr capacity bag. The night bag tube pushes into the conveen and is quite secure. I also use a leg strap to avoid any pulling on the tube. When at home I use a stand to attach the bag to. It is essential that the top of the tube (attached to the bag) is below the level of the top of the mattress. Failure to ensure this may well result in the tube and the end of the conveen filling with urine and then coming adrift. I put the stand in a plastic tray and this means that if you forget to close the valve then there won't be a disaster. Away from home in hotels I usually use the waste bin (plastic not wicker) with the night bag in a stout plastic bag. It is natural that you will be more anxious when not in your own bed.
Travelling away from home is relatively easy as I only have to take the conveens, night bags and prep wipes. When going away I suggest that you take twice as much as you would normally use. I also take disposable bags for used conveenes and incontinence shields. I change my nightbag weekly.
For me the real benefit of the neo is that my life is almost as normal as before. I can cycle as before and enjoy days out with no need to take anything with me - albeit I do need to use the toilet more frequently than before. It is just my night time routine has changed. For me, with my lifetyle, the neo bladder works well.
Derek (From Reading)