Using the toilet after penile cancer surgery
Jim hated every minute of wearing a catheter. He found having the bag strapped to his leg was...
Did you have a catheter at that point?
I did and I hated every minute of it [Chuckles]. It’s... you can either have it hanging loose, which is not very comfortable at all, or have it strapped to your leg, which was much, much better. So I would suggest that if you can have it strapped to your leg and it then it takes a lot of pressure away from the penis. Because after an operation when you’ve got the catheter it’s not a comfortable experience at all. So I didn’t like that [chuckles].
Big D wore a catheter for a week after surgery; he was frightened that he might pull the bag off...
I came home and I had this catheter and the bag on for a week. The hardest job is emptying it in the night. I was possibly a little bit frightened that you might pull the bag off or whatever while you’re asleep, but I found I cope very well with that. I had a fair bit of assistance from my partner. Then you go back and they take the catheter out after a week – that’s to stop, excuse me, infection more than anything. After that I was alright.
John said there was no discomfort with wearing a catheter and a bag but he felt embarrassed about...
What did you struggle with most in regard to the catheter?
Embarrassment. I couldn’t hide what I what you know… Because they said you know they said to me ‘well of course it….there are so many different types of catheters and you can have a bag which is unobtrusive and so forth and no one will know’. You know but I think... I would know and I knew and even when I was carrying them I mean they were they were... I went down to London with one tied onto my leg. You know, so people in theory didn’t know but didn’t matter- I knew. So… just the embarrassment of sort of having that.
So more that than the physical discomfort?
Oh there wasn’t any physical discomfort. I mean I just got used to sort of emptying the bag. It was just the physical discomfort was there initially because of the soreness of the well not the soreness but the treatment of the penis, you know. But I tell you I had a laugh with the nurses. I mean we had we had fun trying to sort that one out for a long time.
Rodger had a catheter in for a fortnight after the operation. When he had the catheter removed,...
Well I was lucky really. I had... the catheter in... for a fortnight so really from a waterworks point of view I had no problems at all there because it was all automatic. Once I had the catheter out on the first visit to take the dressing off my catheter came out she said that I’d got to sup a pint and half of water and ‘you’re not leaving the hospital until you’ve been to the toilet and I seen that you’ve been to the toilet because I want a sample.’ Alright, you think ‘oo what happens if I don’t want to go?’ she said, ‘You’re still not leaving and if you don’t wee then the catheter will go back in.’ So it gives, it gives you that ‘I’ve got to go to the toilet, no matter how long it takes I’ve got to go because I don’t want the catheter back in. I want to be able to function on my, on my own bat.’ And other than sitting down for quite a period of time... I had no problems again whereas when I was in the hospital there were several people there going in for bladder problems and they couldn’t go to the toilet... so it made me realise that although I’d had the catheter in I could still function as I would normally do although not necessarily to the degree as I did before, possibly not as much as I did before because I probably was going... more regular for short, short amounts where I should imagine that would be because of the operation, just to be sure that you weren’t filling your bladder up and then obviously causing a major problem going to the toilet every time but now I have no problems with it at all.
Steve found it difficult at first to control the flow of his urine but trained himself how to do...
They said to…you’ll have to sit down for the rest of your life. But I found that more messy than standing up. You just have to learn how to go to the toilet again. You have to learn the... you’re going to have… you spray more than... pee in a direct line any more. So you just find ways round it. It is quite difficult but after a few months I’m quite happy now. I’m quite accurate too [laughs].
So you had to train yourself in a way?
So as I say, going to the toilet I’ve learnt how to do, I’ve learnt that I, it sounds bragging now, but I held it with two hands and I hold my hands so I can stop the any spray that does decide to go all over the show it don’t go on my trousers [chuckles]. But I’ve got it under control pretty well now so… it’s…. it takes a little bit of practice. It might not... just think of it when you was a baby and it was going all over the show and now it... it takes a little while to get the hang of it. You’re peeing from a different direction all of a sudden.
James finds using a funnel helpful to direct the flow of his urine when using the toilet.
I tend to sit down to go to the loo, nowadays. It… it tends to come out sideways does the water, rather than straight. Which makes it a little bit awkward when you’re stood up hitting the pot [slight chuckle]. There’s no more I can say really, it’s just…..I do have a... a funnel, there’s a little funnel affair... which is very helpful at times for directing it.
Are you managing that OK or...?
Oh yeah, yeah it... that doesn’t bother me at all. It’s a bit of a challenge but it does... it’s alright. We can cope with that.
Les talks about a procedure to stretch the opening of the urethra at the end of his penis in...
I still have to go back for checkups and it’s like the end of my penis now is, [chuckles] well one of my mates was telling me is it like a welders glove [laughs]. It’s sort of quite hard and I have to moisturise it and the end of the penis is closing up, and I was in hospital, it was just after Christmas, so that would be January 2011 where they did the, what they call the is it ‘meatus dilation’? and they put this contraption in and blow the end open a bit and, now that is really, really sore [laughs] and I must admit I actually spoke to the nurse at the hospital last time, if I’d have known it was going to be that bad at that time I wouldn’t have had it done. But, the results of it have been pretty good because the reason I went was the, this hole was closing up and every time I went to the toilet it was just spraying everywhere, it was just like a fire sprinkler and I had to sit down to go the toilet all the time. And after going through this procedure, you know I’ve now got a proper stream when I go to the loo. And I have to sort of moisturise it still and they’ve told me to put a catheter in twice a week just to keep the opening, open and that’s where we’re up to [laughs] at this present day [laughs].
Michael worried about using the toilet after his penectomy. At first he urinated through an...
I was, I was just glad to get rid of it and I think that was the, strong part of it, I just wanted to get rid of it so that didn’t really affect me whatsoever. Worrying about going to the toilet probably was one of the things I was, uptight about but that worked out alright anyhow so…
I can go – well they gave me – they started off one in the middle of the stomach, which is a bit messy at the time and then when I had the next operation they put it right underneath so I’ve got a little hole right underneath, in my groin which is perfectly alright, yeh. It’s good.
Simon was grateful he had been given a new opening for his urethra in his groin rather than...
I was told at first that I’d urinate from a different place altogether but the surgeon there managed to just do it so that I [hesitation] it comes out where, where it did before, which has been a lot easier for me. Because I couldn’t in my job I couldn’t sit down, to urinate because there’s no toilet facilities where I work. You know I‘d have to I’d have to walk half a mile and back, you know like. I take water tablets so I pass water about ten times in a morning. So [chuckles] by the time I did all that I might as well not bother.
Well like I say, it’s difficult, it’s not easy passing water where I am, you know. It’s alright if there’s proper toilets and you can take your trousers off that’s no problem but it’s just that if you can’t really go in urinals or like you would before and if you’re out and about and you’re bursting... it’s difficult because you’ve got to more or less to get undressed.
It has only been 3-4 weeks since his last operation so Colin has to sit down to use the toilet,...
But at the moment I mean it’s been 3,4 weeks since I had the last operation so obviously I go to the toilet and I have to sit down..on the toilet. Which is not a big concern because I mean well I think I’m fortunate or lucky enough that at least my movements to urinate is great. There’s no problems there. You know, there’s no problems at all. I don’t need to go every 5 minutes. So I’m okay as regarding that. At the moment. So…yeah… great, I’ve got no..I’ve got no qualms about it, no problems with it at all. No. All I want to do it live and get on with my life.
Jordan says he has a better quality of life after treatment as he no longer has discomfort when...
No I would say... it’s a better quality of life because I haven’t got the discomfort when I was urinating now which it was getting towards. Because it the hole was starting to close up because it was right round there. But now although… as I explained it’s, it is, more awkward going to the toilet. I can’t I don’t stand there with other blokes. I can do on a stall… where but not on a on a urinal because there’s a fair chance I’d miss it. And a toilet bowl is difficult to get it exactly right so I sit down and that just makes it a lot easier.
Does that affect your social life in any way?
No, no. It’s just I suppose nobody sees me. You go into a cubicle and they think you’re doing a number two so that’s alright. Sometimes you have to wait as opposed to stand by a urinal but my lifestyle is such that it doesn’t impact on that at all.
Ian says youve got to be aware of where you are, because you need a cubicle to go into to urinate.
That’s the only difference which you’ve got to adapt to one way or another, you know. And there’s no I suppose you’ve got to be aware of where you are really and how you do things. Going to the toilet you’ve got to think because you just can’t go in and stand there, you’ve got to hope there’s a cubicle to go in, you know and then you’re ok. But other than that, nothing’s different [chuckles].
After having his catheter removed, Frosty had problems emptying his bladder and with leaking: he...
I’d had a few problems because they’d taken the catheter out when they came back – this was about two weeks after I’d come back, sorry, I came back and saw then the next day. They took my catheter – I was having trouble... at night and I was having to wear pads because my bladder wasn’t strong enough, it was, I was weeing and then leaking two or three times the first couple of nights so I decided to go, we went and got some pads and suchlike from the chemist and I was wearing them at night and I felt a bit… down then and that was the worst of the whole thing funnily enough and probably a man thing, you don’t want to wet the bed if you know what I mean but... Then I know exact date, it was the 13th of September I was back in to see them and they did some tests and they found that my bladder was still three quarters full after I’d just passed water and they said, “Oh, there’s something wrong here der…der…der…” Anyway the surgeon was called and he came in, saw me and he said, “Right, you’re being kept in and I’m going to have a look at that in a couple of days.” So I wasn’t very happy about that purely because it was my birthday and I was meant to be taking the whole family out for dinner that night. It probably saved me money but that wasn’t the main thing on my mind at the time. Anyway, I went in and I had the op about two days later, they didn’t do it the next day, I think they was going to do it but there was an emergency or something and they said, “Terribly sorry you’re going to be, it won’t be today it’ll be tomorrow.” So that… anyway I then had that op and the...I was a bit woozy coming round. It was on the Friday the op, on the Saturday my wife and my daughter came up to see me, I remember them coming but don’t remember much about it. And Sunday morning the surgeon came round to see me and he said, “Well” he said “all good news, everything’s sorted out, I’ve sorted your water works out” and he said “from now on you’ll be peeing like a twenty three year old” and I can honestly say I am but we won’t go into that! [chuckles] I’m, he’s really you know, sorted it all out.
When interviewee 21 has an urge to urinate he cannot delay it, he has to go quickly.
Now there’s one thing happened because when I go to pass urine then sometimes I cannot control it. That’s all. Suppose I got to go to toilet when I feel I go to pass urine then I go straight away. I can’t say “oh I can wait five or” no I can’t wait it.
Paul can wee standing up but prefers to use a toilet cubicle than a urinal when in public as he...
Oh yes, yeh. I can give you the perfect example, when I was at my nephew’s wedding and I went to the toilet and some of the chaps came in I had to try and find a cubicle because I didn’t want to, you know where normal men can just go to a urinal and wee, I can’t I have to, because it’s a struggle to try and find what’s left, I couldn’t just stand at a urinal you know so I would sooner hide myself away into a cubicle. So…
I can still like stand there now and urinate, but I did tell the consultant that there are times there that instead of just a normal flow sometimes it’s spraying and that was why he wanted to check my bladder. But I also had to have four tubes up inside me, this is before the camera, to, he said in the hope to stretch it, to help when you go to urinate that it you know. It, it hasn’t really, it hasn’t made much difference but at least I can still kind of stand there like any normal man and urinate, it’s just that if I’m out in public places like I gave you an example of the wedding I went to. Because, you would feel like when you’re struggling to try and find yourself, to urinate, you know you think all the guys are looking at you and thinking oh is, you know, ‘what’s the matter with him’ kind of thing. That was why I hid myself away in a cubicle. Just out of sheer embarrassment.
John Z has a radar key so he has access to lockable public toilets. He needs to urinate often so plans journeys around toilet stops.
If we’re going out in a group I might need the toilets and I have to go into the cubicle rather than a urinal. As I said I have a Radar key which is handy because you go to the toilets, say you’re on the coast some of them are vandalised and you can’t lock the doors and you’re…so it’s a bit embarrassing so with the Radar key, you’re in the toilet, you’re in by yourself and you can do what what’s necessary and out again. Yeah.
To go…any distance I need to make regular stops I’m not so confident in driving any distance because you can’t just stop and go behind a hedge. Not nicely [chuckles]. I haven’t tried it but [chuckles] I would think it’s very awkward so yeah I don’t, even to go to 30 miles say to [town] I usually stop at [other town] and use the toilets there. So it’s about half way and I need to relieve myself. Yeah [chuckles], yeah.
Last reviewed July 2017.