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Op waiting times

User
Posted 22 Feb 2020 at 19:30

Hi new member fortunately not got cancer but diagnosed with enlarged Prostate, discharged from hospital after suffering water retention . Fitted with long term catheter and told I need op initially told it would be listed as urgent but now changed to routine , after first week already got bladder infection . My local nhs hospital have told me it will be at least a year before I can have op .Whilst I accept it is not as bad as having cancer diagnosis any advice welcome. 

User
Posted 23 Feb 2020 at 17:48

Hi Chris 

Thanks and yes now found benefit of instillagel , I'm booked for 3 monthly changes .I'm going to try and get the option of pills to reduce prostrate , I feel 12 months is too long to be left without options.

Thanks Terry 

User
Posted 24 Feb 2020 at 09:29

Hi Chris 

I do have a flip flow valve fitted , so can at least go as and when needed .

Thanks Terry

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User
Posted 22 Feb 2020 at 19:57
Go and discuss with your GP, you may be able to get it sooner by travelling to another hospital. But as a non-urgent case, it will probably be a bit of a wait everywhere. Have you been prescribed medication to help reduce the pressure on your bladder? I assume you don't have private medical insurance - do you have any savings that could be used to have the op privately?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Feb 2020 at 22:26

Thanks for reply not offered anything except long term catheterisation will have to be last resort to pay private intend speaking to doctor re other option. 

User
Posted 22 Feb 2020 at 23:07

Hi Terry, 

I didn't like having a permanent catheter in. Fortunately one of the district nurses put me on to intermittent self catheterisation. It may not be appropriate for everyone but it made a massive improvement to my quality of life. If you want to know more let me know. 

Dave

User
Posted 23 Feb 2020 at 10:08
Thanks Dave

Will discuss with district nurse when I see her again this week .

Terry

User
Posted 23 Feb 2020 at 14:27

Terry

A Suprapubic catheter is probably preferable to a urethral catheter for a long term user. Unfortunately the wait for a SPC can be quite long as well. Soreness to the end of the penis can be relieved with instilagel or hydrocaine, also make sure you keep it clean where it enters the penis.

 I have assumed you have a urethral  catheter, how often are the planned changes ?

Thanks Chris

User
Posted 23 Feb 2020 at 17:48

Hi Chris 

Thanks and yes now found benefit of instillagel , I'm booked for 3 monthly changes .I'm going to try and get the option of pills to reduce prostrate , I feel 12 months is too long to be left without options.

Thanks Terry 

User
Posted 24 Feb 2020 at 00:51

Hi Terry, 

Here is a post I made on a different thread. I would have linked to it but can't, so copied instead. Some of it is a bit out of context without the original thread but I'm sure you can make sense of it. 

Originally Posted by: Online Community Member

Yes, I have a success story. My story is not directly comparable to yours, but I think it is similar enough to be relevant, it may help your father. My problems were quite short term. A very helpful district nurse changed my life when it comes to catheters (of all the medical professionals I have seen over the last couple of years she is the one who made the most change to my quality of life), remember consultants you see once every few months, radiotherapists once a day for a few weeks, but you need to piss several times every single day of your life, so getting that right makes all the difference.

My first problem was urinary retention, which later lead to my diagnosis of prostate cancer. As a result of the urinary retention I ended up at A and E being fitted with an indwelling catheter. After a week Twoc (trial without catheter) was arranged. I had a few problems in that week, white discharge at tip of penis, blood, pain at tip of penis were amongst them. The fear that when sleeping a pipe would disconnect and things would get messy were all reasons I was looking forward to the twoc and being rid of the thing. I guess I ought to mention that if this catheter was going to be long term, sex was going to be a problem, not at the top of the list in an emergency, but when things may drag on for months it could be an issue. 

BTW I did actually find not having to get up in the night for a pee rather good, and when I went down the pub with my friends it was really convenient never having an urgent need to piss, just discreetly checking if the bag was full and then opening a tap (in the cubicle) when necessary.

Anyway the day of Twoc arrived, but things did not go well, basically I could not pee. So as arranged I called the district nurse back, with the prospect of a new indwelling catheter. I must admit my thoughts on the twoc failure were that I probably had an inflamed urethra after a week with a tube down it, and maybe given a bit longer maybe a day or two to recover and all would be sorted, but of course how would I pee whilst recovering (catch 22). However she suggested "Clean Intermittent Self Catheterisation (CISC)", for which you are supplied with onetime disposable tubes (box of 90 is assumed to last a month, but just order as many as you need). This is not for everyone you need a normal amount of dexterity, and more particularly you need not to be frightened of the somewhat unpleasant feeling (not actually painful) of inserting a tube down your penis.

I was taught how to do this in about 20 mins (we are talking practical). I was told to do this whenever I needed to pee and just before bed and first thing in the morning. I actually only needed to do it for about a day and a half and then I was back to normal. The really important thing is that I now had nearly 90 tubes available and if I had urinary retention again I could now sort it out myself.

So once your fathers immediate urinary tract infection is cleared up, if he can do CISC he will not have to tolerate an indwelling catheter, he may then after a few days be able to piss quite normally, but if urinary retention starts again he can revert to CISC, until it all clears up and he is back to normal peeing, or if things are not going well for several days then he can call the district nurse or go to A&E and get appropriate treatment. The important thing about CISC is that it gives a breathing space, where at least the bladder can be emptied with out going for the full indwelling solution.

After HDR Brachy RT, I once again found myself with an indwelling catheter, and due to a bank holiday and no consultants being around, the indwelling solution had to stay until I could find someone to confirm that it would be OK to do CISC post RT. Anyway after a few days of CISC all was back to normal. 

I now still do CISC about once every three months just to keep in practice, so I know I can do it if I have urinary retention again. Believe me CISC changed my life, it put me back in control.

Dave

User
Posted 24 Feb 2020 at 08:30

Terry

Might be worth asking for a flip flo valve between the catheter and the bag, if appropriate. The valve can be kept shut until you have the urge to pee then opened or left open at night, so no night visits. The bladder may get lazy and lose capacity if permanently on free drainage.

Thanks Chris

User
Posted 24 Feb 2020 at 09:29

Hi Chris 

I do have a flip flow valve fitted , so can at least go as and when needed .

Thanks Terry

User
Posted 24 Feb 2020 at 09:32

Thanks Dave 

Have appointment with District nurse tomorrow will definitely discuss with her .

Terry

 

 
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