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About CancerHi im 59 , quite fit and active and about to have a prostatectomy in the next few weeks. Im just wondering what levels of incontinence people have experienced immediately after the cathrter removal and how long you have had any ongoing problems for. Just understanding and how to prepare for nightime and during the day so i can make necessary precautions to limit my embarassment as much as possible. thanks
Hi Ian ...
I had a catheter for 4 days after my mastectomy. . And was fine after ... just a little tender .... everyone is different, and I wouldn't worry too much ... though I take it your male from your name, so may be different for men ... hopefully you will get others pop by with their expierance of it ... Chrissie ; ))
Hi Iann.
I had a robotic radical prostatectomy on 21 Dec 2010 at age 56, with the catheter removed two weeks later. I had already bought in a large supply of incontinence pads before the catheter was removed.
The immediate effect of removal was that I couldn't pee at all and the hospital kept me waiting around (drinking coffee!) until I had actually managed to pass some water. After that, all my signals were mixed up and I had no idea whether I needed to go or not. That night I didn't get much sleep. Eventually, my body reassociated the signals from the bladder with being full or empty and I was no longer running to the loo only to find there was nothing to pass.
I was surprised (but in hindsight it was obvious) to find that I was passing a lot of blood clots with my urine. This continued for several months. Also my penis developed a massive bruise which wasn't painful. A colleague who'd been through this earlier warned me of this "Purple Ronnie" stage. As instructed, I did the pelvic floor exercises several times every day.
At this stage, I cut out all caffiene and went to de-caff tea and coffee. I stuck with this for about 8 months and then went back to the caffienated versions.
For the first month, although I could control when i wanted to go, any movement or cough or sneeze would release some urine into the pad. It was a little better lying down, but I still had to wear a pad 24/7 except in the shower. Listening to "I'm Sorry I Haven't a Clue" was a nightmare, and for the first time in my life I actually ****** myself laughing 
After about three months, the amount of leakage reduced considerably and I was able to stop using the full size pads and instead buy the much thinner Always Ultra pads instead. By the time six months was up, I was reliably 99.99% continent and leak free, so I stopped all pads; however I carried spare undies and a few spare pads in my briefcase. I only had one accident when I sneezed, but I was right outside a toilet and it wasn't a major incident.
After 8 months, I was confident enough to go on a day trip by train, wearing no pads, but still carrying some spares. I made sure that I emptied my bladder every 2-3 hours, just to avoid any build up of pressure. I still kept some precautions when I was sleeping, although I never had any accidents in bed.
After a year, I gave up on all precautions and just went on as before. Since then I've had a couple of very minor accidents, losing no more than a drop of urine each time. Over the years I've kept up with the Pelvic Floor exercises and the number of these small accidents has dropped to almost zero - in fact, I can't remember the last one.
So, really it was a case of continual small improvements over a 6-8 month period. This, I think, is normal for most men. After surgery, a lot of healing has to take place, and I think that you shouldn't expect much improvement until you've stopped peeing out blood clots.
I suggest you start now (before surgery) with the Pelvic Floor exercises, and continue with them for life.
One further hint. When you come home from surgery, you'll be given an overnight catheter bag. PUT THIS IN A BUCKET. Almost everybody forgets to close up all the little valves at some time, and if you get it wrong you end up with a carpet full of **** as you sleep! It nearly happened to me, but fortunately my bag was in a bucket, and it didn't leak onto the floor.
You should also expect to be very very tired after surgery. For two weeks I would wake up.. shower, and have breakfast then crawl back into bed until lunchtime. After lunch I could normally watch about an hour of TV, then crawl back into bed again and kip until about 6 pm. By 10 pm I was ready to go to bed and sleep right through to 8 am the next morning.
Hi Iann; I know your post is a few weeks old now so I'm guessing I might be a little late with this post and you've either already got your catheter or you've had it removed, but I thought I'd add a few things on to telemando's wonderfully detailed post.
My dad was diagnosed with kidney cancer and had a catheter for a while to flush out his kidneys before they decided to remove the one containing the tumour, so as I am the only one living at home with him I was looking after him the whole time. First thing I would definitely suggest is to buy a reusable urine bottle with a non-returnable valve. As telemando said, you'll find it difficult to know when you need to go to the toilet, and when you do need to go it's sometimes too late for you to actually get there, so having a urine bottle nearby is great because you can just grab that, go and empty it into the loo when you're done. The non-return valve means that so long as you don't fill the bottle with more than a litre's worth, it can never spill out, even if you turn it upside down, so my dad used to keep his in the bed with him at night in case he woke up with the urge to go and couldn't get to the loo; the bed would always be dry in the mornings even if the bottle was quite full. We bought one with a glow-in-the-dark handle as well, so it was easy to see in the middle of the night. I can give you the link to the one we bought if you'd like, or you can just search for one yourself; the one we got was about £15 I think but there are probably cheaper ones out there.
We also bought some waterproof bed pads just in case he did have an accident, but he found those too uncomfortable to sleep on so we never used them in the end. Incontinence pants are helpful too; there are some quite discrete ones on the market nowadays.
Yes, you will pass blood clots; the hospital will keep a track of that though and let you know if there's something to worry about. And it's funny that telemando mentioned the bruised penis; my dad had the same thing. Because he didn't really have any feeling in it for a long time, the nurses reckoned he'd trapped it and laid on it in the bed, and it was sore, bruised and purple for while (so I was told; obviously I didn't want to look at that myself 
)
And yes; definitely put the overnight bag into a bucket! And make sure you listen to the instructions the nurses give you when they tell you how to use it; my Dad didn't pay enough attention to what she'd said and couldn't remember how to do it when we came home, so we had to spend a good hour or so working it out from very badly worded instructions that came in the package :P
Hope everything goes well (or has gone well) for you.
All of this info is great. Thank you.
Can you advise where you bought the reusable urine bottle with a non-returnable valve please?
Thank you, that’s great. Cheaper than eBay.
Excellent explanation by Telemando. This is exactly what I am going through after my prostate surgery and catheter removal. I guess as you get older one needs to do pelvic exercise more. I realise now that I am sometime off from becoming leak-free. I have had my surgery 6 weeks ago.
Did Decaff tea and coffee affect the bladder meaning it and did not make you leak excessively??
I was advised to go decaff when I saw a continence nurse for a routine check up. It did seem to help, but like all these things, it's difficult to quantify.
