Incontinence

Hi Rob

How long ago was yor op? It would probably be useful to others if you could add a summary of your journey in your profile.

I had my op nearly two years ago. Leakage really did bring me down initially and I was so embarrassed / frightened to even set foot out of the door. Vast improvements in leakage occured after about six months, which enabled me to manage matters so much better. I've had gradual improvements since  to the stage where I will still usually leak  lightly if I walk or exert myself in any way late afternoon / evening and if I exert myself greatly at any time. It does not get me down now, I just consider it a bother.

Initially I was using about 4 No. 3 Tena a day. I have worn washable Tena boxers throughout, which I have found really great in mopping up any outward leakage from the pads and also have been totally adequate in themselves for most of the time for over a year for me. I now add a No. 1 or 2 pad when I leave the house if I anticipate it may be useful.  A big benefit for me was to buy a urine bottle in the very early days and use that whenever I stood up or was about to get out of the car (whenever practical). I picked my time when in the car and placed a coat or similar over my lap.

I asked my nurse about clamps but she was against it. Her view was it was best to persevere so the body and mind got use to the difficulties and made adjustments themselves. There are also sheath catheters and an op available but I have no practical knowledge of these, although I have read many forum posts which indicate that some men find they are good, together with the clamps.

Leakage is, as you say, different for everyone. But I eventually came around and was determined it would not beat me and I realised it could be a very long journey, with no guarantee  of success.

The op was for a purpose and I do hope it was successful for you and you will grow to be a grumpy old man, like I intend to be. What you need to try to avoid is being a grumpy man now because of incontinence. Concerntrate your efforts on being patient and have faith that it will improve

My NHS board have continence nurses in the hospitals and by contacting one I got incontinence pads and pants sent to me free.  You need to see the nurse first so that she can assess your needs and then you can order over the phone every couple of months and they are delivered to your door - in plain wrapping.  My deliveries always seem to get here really early in the morning so we have to get up early and open the porch door sot that he can leave them - if we have gone back to sleep or still getting dressed.  The pants were good for bed time as quite often I couldn't make it to the lavatory on time.  The smaller triangular pads I wore during the day.  I never passed a toilet I didn't try and use and carried a card from Macmillan to say that my cancer treatment meant I had to use a lavatory at short notice which I could show in cafe's, pubs and shops so that I could use their facilities without having a cup of coffee or a pint or even if they didn't have a public toilet I was allowed to use their staff lavatories.  Keep doing the exercises and also ask your Doc for medication to help too even if you are on medication it could be that you need a change of dose or medication.  So, always helpful to ask about it.  It may also be helpful to ask for physiotherapy help with the exercises to ensure that you are doing them correctly and do them anytime during the day just do them as much as you can and then some more.

Thank you for the great posts  Static and freefaller 

Here's a link for anyone which details how to obtain a "toilet card" and a "Radar" (disabled toilet key).

https://www.macmillan.org.uk/cancer-information-and-support/bladder-cancer/using-public-toilet

Best wishes - Brian.

Forgot about the key.  I have one of those too.  Always useful as a lot of the small villages around here lock their public lavatories in the evenings these days.

Firstly, can I thank you all for all your comments and shearing your own personal experiences which included some very wise and caring advice which I found very helpful and comforting indeed. 

In answer to some of the comments I've received. I had my operation on the 19th of August 24, about four weeks ago, which, I guess, makes me an inexperienced newbie to this experience and this is why all your comments and information are very important to me. 

I only intend to wear the clamp for short periods of time. For example, if I just nip to the shop or do some housework as when I am sitting or lying down there is very little if any leak at all. I will, also, have to wear it on my Blackpool trip as I am determined to go and not miss out. I will be conscious of my bladder filling up and I will make sure that I go to the toilet regularly. I have a Radar Key and also carry a card from Macmillan to say that my cancer treatment meant that I had to use a lavatory at short notice to use in shops and pubs etc. 

I am also determined it will not beat me and I also realise it could be a very long journey, with no guarantee of success.