People with a serious medical problem may not want to travel abroad because they don’t want to be too far from their own doctors or from good medical care. Carol, for example, who had endometriosis, feared that her bladder might perforate and that she might need medical attention quickly. However, she liked travelling within the UK, even with a catheter, because it made her feel ‘normal’. She felt perfectly comfortable driving with a leg bag.
If they plan in advance, there is no reason why people with a long-term catheter can’t travel long distance, including overseas. Indeed, a catheter may make travelling much easier for some people. Alex, who has multiple sclerosis, said that having a catheter had liberated her and changed her life for the better.
Alex is a disability consultant. She is married. Ethnic background/nationality: White British.
I want to make the point that for me having a suprapubic catheter has totally liberated me, really changed my life. I’ve been able to go abroad on long haul flights, I can go out for the whole day visiting people or doing work shops or training or giving public speeches without having to worry about, “Do I need the loo, I can’t drink this”. I’m able to drink as much water as I like and it really helps me.
If I do not drink at least a litre a day and I drink every day a litre and a half, if I don’t do that I really physically notice it. My bladder hurts. I feel like I’m about to get an infection, so drinking water is so, so important I think, for good bladder health for anybody, suprapubic catheter or not, but it’s liberated my life and I’m so pleased I’ve had it done.
Age at interview:
Alex is a disability consultant. She is married. Ethnic background/nationality: White British.
One of the things I found really useful is having the right tools with you, and one of the things I found really useful is something called a Uribag, but the male version. Because the male version has a lid that you can close and it seals it so that the urine that you empty into the bag doesn’t come out.
So what you can do is, when you’re in a car and your catheter bag is full and you want to empty it, you can sitting in the car, you can get a personal assistant or your partner to use the Uribag which is plastic, about a diameter of a 50 pence piece with a lid and a rubber bag at the bottom which folds up into the tube when you’re not using it. Then you pull it down, then you open the lid put it over the valve in your leg bag, open the valve, all the urine drains into that. You then close the lid, after closing the valve on your bag, then you close the lid on your Uribag and if you can’t get to a gutter or a loo to empty the bag then you can keep it sitting on the floor of your car and the lid will stop the urine from coming out. And it’s brilliant.
We’ve used it on aeroplanes, trains, in cars. It means also you don’t have to go into a toilet; you just go into a room that has a sink.
Why don’t they make them for women?
Well they do but the women’s version is just like a mini urinal that you put over your vagina. You pee into that but then there’s no way of closing it and sealing it or, I don’t know why, but it’s not designed to be used with your catheter bag.
That’s why I’ve adapted it, not adapting it because I don’t do anything physical to the actual apparatus.
So it’s a bit like a urine bottle that was designed for a man to use when he’s out?
But you use it with a catheter.
Yes and I’m adapting it to use, for using with a catheter.
And it makes travelling, going to visit friends that don’t have a loo on the ground floor, everything. And, as I said, you can do it in your car.
People usually made careful plans for a long trip or holiday. Jennifer, for example, who had a suprapubic catheter, found it useful to keep a drainage bag in her large handbag when going out for the day or on holiday. When she needs to empty her bladder, she discreetly puts her handbag next to her and connects her catheter to the bag. As soon as she gets to a toilet, she can empty the bag or discard it.
Stewart had a catheter after prostate surgery and usually used a flip flow valve to empty his bladder, but sometimes for a long journey used a leg bag. On a long coach trip, he emptied the leg bag whenever the driver stopped for a break. Some people used larger bags that could hold more urine when travelling.
Stewart is a retired teacher. He is widowed and has 2 adult sons. Ethnic background/Nationality: White British.
What kind of long journeys do you make that you then have to think about the catheter?
Well not many, I went on a cruise last year and I’m going on a cruise this year. And it’s always a long journey down to the port. But I go with Saga, you’ll know Saga no doubt.
I go with Saga and I’m very pleased with them. And they pick me up from home, and if we’re going down to Dover or Southampton, they’ll have a stop on the way, which is enough.
So you then can empty the bag when you stop?
Or are you okay for longer?
I’m okay for, well, if we stop then I do whatever’s necessary. Sometimes it will be emptying the bag; sometimes it will just be relieving myself. If I know for certain that he’s going to stop within two hours, then that’s alright.
Yes. And on the cruise, on the cruise ships themselves, everything’s, is it comfortable?
Yes. I don’t get any special treatment or anything out of the way, but I know that it’s there if needed. And on the cruise ship I can carry on as I do at home. On the cruise ship, I don’t wear a bag during the day but I do have the bag, the night bag at night. So that’s just the same as what it normally is.
Air travel may need particularly careful planning. It is a good idea to get a letter from a doctor explaining that special supplies or equipment may be needed in hand luggage. This letter may also help with security checks. Kenneth still enjoyed overseas holidays. Airport security officers had patted him down and questioned him, but as soon as he said ‘catheter’ they let him through. Rob had also travelled short distances by air. He said that it was fine as long as he found out where the toilets were and used one just before boarding. His wife Pat explained how they managed.
Well I wasn’t sure what I did with the catheter because it’s only a three hour flight so I asked the pharmacist and he said, “Oh I’d be interested to know, I’d leave it on open drainage”, which I did. I went back and told the pharmacist because there are other people. I don’t know how you’d be on a much longer journey but I don’t intend to do that, but he [my husband] was fine.
And then there were always toilets immediately you come off anyway, but no I’ve had no, we’ve had no problem at all.
But you do your journey, not just because of the catheter, but because of the wheelchair and bags and I’m on my own, I do it in stages. I stay the night before near the airport and this sort of thing. Heathrow is too big and there are too many people for you to get too much help whereas when we get the other end it’s second to none, it’s a smaller airport. I don’t have to do a thing, they do it all.
You’re met by somebody with a wheelchair?
We take our own and they bring it to the aircraft as we come down in the lift. They have a disabled little sort of cabin that they lower you down. Although Rob can walk down the steps, they prefer you not to and they lower you and then they give you your own wheelchair and help you through and get your luggage. So we’ve learnt, it is a big thing.
One thing you can’t do with so much luggage and a wheelchair is go on a transfer bus, that’s too, I can’t do that. So I stay very near where there’s a covered way, it’s six minutes’ walk, and I can manage that if somebody helps me with the luggage.
Long haul flights may be particularly difficult for anyone confined to a wheelchair. Plane toilets are small. Annie was paralysed after a riding accident and found long flights difficult because she could not move from her seat.
Annie is married and has 3 adult children. She is a retired nurse. Ethnic background/nationality: White British.
Well my catheter, travelling by air is quite difficult because I can’t move out of there. I mean I have to go into the aeroplane in the little chair that they provide. I have to be lifted into my seat, and during the flight I can’t get out, that’s it. I can’t go to the loo [toilet] in the aeroplane. I mean I’ve never even attempted to go to the loo. They don’t have loos which are at all accessible for somebody who is physically disabled.
Although the girl I was talking about, who is a sportswoman, a paralympian, she does manage. She goes on her own and she manages and she gets to the loo somehow. I don’t know quite what they do, but she can. She’s so agile at moving about and doing transfers that she does manage.
But when I go on an aeroplane I have to have my husband with me, and we have this secret manoeuvre where I empty the contents of my leg bag into a bottle which he has in a bag and he takes it off to the loo and empties it. And people look rather quizzically and wonder what on earth’s going on. But that’s the only way I can survive a long flight.
When travelling, it is best to take supplies of everything that might be needed, such as spare catheters, drainage bags, pads, pants and wet wipes. It is also worth finding out in advance about the facilities available at the destination, including how to find health care and medical supplies. Iain said that he did not usually change his own catheter but took a spare one on holiday so he could change it himself if necessary. Iain described his travel planning:
Iain is a married IT Officer. He works for the local council. Ethnic background/nationality: White British.
For work, for example, if we’re going away on a training course somewhere, I’d have to think very carefully where I’m going. And, for example, I can’t really fly to somewhere else easily and go there say for a week somewhere. I’ve got to make sure I can get access to, if I need healthcare, I need to get it easily. So I tend to stay within a wee local area as much as I can. Because that way I know I’ve got easy access to healthcare if I need it. If I’ve got problems caused with the catheter, I can get at the end of the phone the number to phone and get help.
It’s like when I go away on holiday soon, I’m taking the catheter, a spare catheter with me so if I have a problem I know that there’s somewhere I can change it, because I’ve got all the supplies with me to change it. Although I don’t normally change my own catheter, I know how to do it.
Ann’s bladder problems started after a hysterectomy followed by radiotherapy for uterine cancer. She had a suprapubic catheter and talks about how she planned her first holiday away from home.
Ann is a retired doctor. She is widowed and has 3 adult children. Ethnic background / nationality: White British.
And you mentioned going out. Have you travelled much at all since you had the catheter? Long distance?
I broke my duck last week. I hadn’t been away since the operation in October. And I’ve got some cousins who I’m very close to, and they came to stay with me. And I said yes I would go and stay with them for two nights, because they’re the sort of people you can, wouldn’t feel embarrassed in talking about things to. So I had two nights with them last week and it was lovely to get away.
Were there things that you needed to do, for somebody who’s new, you know, just had a catheter, what considerations are there to think about?
There might be a dribble in the bed. So you need to have one of those plastic draw sheets with a sort of soft top that you get in the hospital. I can’t remember what they’re called. And also I took down an under sheet to put under the top sheet just in case, but I didn’t leave a drop so that was fine. But it’s the sort of thing you have to think about.
You haven’t been abroad at all or anything like that? Or do you go abroad very much?
I’m planning to go to France with the family in the summer. I’m going away with the family in the Easter hols. We’re taking a cottage.
Suitable toilets may be hard to find when travelling. Vicky, paralysed after a skydiving accident, sometimes travelled to London but found it exhausting and quite difficult.
Vicky is single and lives with a full-time carer. She is a trustee of two charities. Ethnic background/nationality: White British.
If I do go to London for a day, it’s usually an early start and it’s late home, and it just about kills me. I feel like I’m jet lagged by the end of the day in London.
But that’s where I found I probably pick up most of my infections because I go and, I don’t know where the disabled toilets are necessarily available, so I tend not to drink much. And I don’t want to have a bulging leg bag and I don’t want to suddenly think, “Oh no it’s full, and I don’t know where to empty it and I’m starting to go dysreflexic.” One of the side effects of having an over full bladder with spinal cord injuries is autonomic dysreflexia, so that can be a problem. You don’t really want to be sitting in a room full of people you know and quite possibly some people you don’t and have to say, “Sorry, I’m going to have to go and empty my leg bag otherwise I’m going to have a stroke.” It’s a bit embarrassing.
I don’t know, I just don’t like any of that sort of attention; I’d much rather it just wasn’t there. So if I don’t drink then I know I won’t get a full leg bag and I know I don’t have to struggle to find a toilet. I don’t have to worry about my leg bag being noticeable to other people and I don’t need to consider it at all, it’s silly because I end up with infections as a result but it’s more than just a straightforward health consideration sometimes
And when you do go straight to London or other places, your carer is with you?
Do you travel by train then?
Yes I do. It’s a very long day usually and I think it’s a tiring day for a PA if they’ve got to drive in and out as well. If we go on the train, at least they can relax on the journey so we tend to take the train.
Train journeys can be difficult too. Badg, paralysed through a spinal injury, had had a bad experience on a train without a suitable toilet. He had to empty his bag into a lemonade bottle. The guard wasn’t pleased when asked to empty it. But Badg also said that, with proper preparations, travelling was usually quite easy.
Badg is a married IT consultant. He is self-employed and has two children. Ethnic background / nationality: White British.
Well, I went back to work and in a factory a few months after I got out of the Spinal Unit. And did that for a few years, which wasn’t too bad. Access to Work did an adaptation on a toilet there for me. Yeah, travelling and going places is not, it’s not a problem. In fact it’s barely more difficult that it was, as long as you prepare. As I said, I’ve got a bag full of stuff in the car so, if push comes to shove, we can change my catheter. I reckon I could probably do it if I had to. I’m sure my wife couldn’t, even if she had to. And you phone ahead or just research where you’re going. It’s relatively simple now with the internet, you can go and street view it.
If you’re going to stay in a hotel, you phone them up and talk to them. Don’t rely on what they tell you. Sometimes I’ve asked people if they could take some pictures and e-mail them to me. If you’re going to a hotel room, you know can you take a picture of the room, because if they don’t have an adapted room 90% of the time that’s not a problem, you can get close enough to the toilet to empty a leg bag. So just get them to take a picture and you can have a look at the picture and make your own decision. You have got to live with it if you’ve made the wrong decision, but you can’t blame them then.
I still go out and visit customers. I go and do some teaching in adaptive technology. I can transfer in and out of the car myself and travel quite easily. We’ve got a caravan which we’ve adapted. I haven’t really adapted the loo; I can just about get around the corner enough to empty my leg bag into it. But most of the larger caravan sites have got beautiful facilities these days with good showers and toilets, and plenty of grab rails and hand holds, so that’s not a problem.
If Badg goes somewhere new and doesn’t know what to expect, he doesn’t drink much before leaving home, and makes sure his bag is completely empty. Then at his destination he takes stock.
It is also important to think about suitable clothes. People may find it easier to wear loose clothes with elasticated waists. Some clothes have pockets that hold a leg bag. Rob had thought about buying special clothes for travelling. When he was last in the Mediterranean he would have liked to have worn shorts again but wore long trousers to hide the drainage bag.
Most people we interviewed travelled with family members or a professional carer who could help them if necessary (see ‘Going out locally’).
For more information about travelling with a bladder problem see our Resources section.