Faye

Age at interview: 29
Brief Outline:

In 2007 Faye became ill and found it impossible to pass urine. She had intermittent catheterisation until 2009, when she had an indwelling urethral catheter for a while. She now has a suprapubic catheter. Faye often has urine infections and feels unwell.

Background:

Faye was a health care assistant before she had to stop work due to ill health. She is single. Ethnic background/nationality: White British.

More about me...

When Faye was aged 24 she became ill, with fever, sickness and abdominal pain. She found it very difficult to pass urine. She was admitted to hospital where a urethral catheter was passed to release the urine. Intermittent catheterisation continued while she was in hospital for those six weeks. She had many investigations; including MRI scans, CT scans and blood tests, but doctors didn’t have a diagnosis. 
 
Faye was sent home after six weeks, but still found it impossible to pass urine, so had to go back to hospital. She tried self catheterisation, but found this very difficult because of other problems, such as arthritis in her knees. Faye went home and managed self catheterisation once a day, but eventually the continence nurse arranged for the district nurse to call twice a day to pass the catheter. During this time Faye often had to go back to hospital with suspected urine infections, which caused fever and sickness.
 
One day Faye decided to visit her brother in Scotland, so asked for an indwelling catheter. She had a urethral catheter for a while but hated it, partly due to its position, and partly because she kept expelling it and it had to be replaced about every three days. After about six months Faye suspected that the nurses got “fed up” with having to replace the catheter. They arranged for her to have a suprapubic catheter. Faye wasn’t involved in the decision making process and thinks that it all happened too fast without enough time for explanations. She doesn’t remember being given any information about catheters.
 
After the operation to insert the suprapubic catheter Faye went home again. Since then she has had numerous urine infections and finds it hard living with a catheter. She often feels ill which makes her tired and depressed. She takes oral antibiotics all the time, and quite often ends up in hospital having intravenous antibiotics too. She also takes Buscopan® to prevent bladder spasm.
 
Faye finds it hard to get doctors to listen to her. In the out-patient clinic they seem to be in too much of a rush. However, she says that her consultant does spend time with her when she is an in-patient on the ward. Faye’s catheter sometimes gets blocked, so she has weekly bladder washouts at the hospital. She goes to the local hospital to have it changed every 4-8 weeks. She changes the valve at the end of the catheter every week.
 
Faye has had other investigations, such as urodynamic investigations, tests that assess the function of the bladder. Most urodynamic tests focus on the bladder’s ability to hold urine and empty steadily and completely. Faye has also had more MRI scans, and doctors have found something abnormal on her spinal cord, but they are not sure if this is related to her urinary problems. Faye is going to be referred to another hospital to see another urologist for a second opinion and for advice. The continence nurse will go with her to give her support. Faye also finds support from family, friends and contacts she has made on Facebook. She has had to give up work due to ill health which she finds upsetting. She receives incapacity benefit, but finds life a struggle. 

 

Faye has weekly bladder washouts at the hospital, which have prevented blockages. She said they...

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Does the catheter ever get blocked?
 
It used to, yes, but I’m going down to the local hospital for bladder washouts every week, and that has stopped it.
 
You were going down every week?
 
I am doing.
 
For somebody who wants to know what a bladder washout is, can you explain that?
 
Yeah, it’s just a bag or a bottle with sterile water in and they’ll just put it through the catheter and wait for it to come out. It’s painless, quick to do.
 
So you have to go to the hospital for that?
 
Yeah. Most people do it their selves. But my urologist don’t want me
to.
 
Have you asked if you could do it yourself?
 
Yeah I’ve asked on a couple of occasions, but he’s just said no, he’d rather someone else does it.
 
Okay. So you have to go to the outpatients do you for that?
 

Just the local hospital. 

Faye has a Prescription Pre-payment Certificate. She should be exempt from paying for catheter...

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Where do you get your supplies from?
 
All over. Some things I have to send off for, and other things I will get from the pharmacy. But I’ve had to find a lot of them and I’ve had to do it myself.
 
Do you get a prescription from the doctor for all this?
 
Yeah, I get a prescription but then, once I’ve got the prescription, it’s in my hands and I’ve got to find where I can get these items from.
 
And does the National Health Service pay for all these items?
 
I have a pre-payment exemption card so I pay that every month, so I suppose yeah the NHS does pay for some.
 
You have to pay for this?
 
Yeah.
 
You don’t get an exemption because you’ve got a stoma?
 
No I have, I do know that I should but I just can’t find anyone else who has heard of it. You know through the support group that I know a lot of people have got free exemptions ‘cos they’ve got the stoma, but I just can’t get anyone round here to understand it.
 
So how much do you have to pay every month?
 
It’s £10.74 I think.
 
A month?
 
Yeah.
 
For a card, and then you can get your supplies,
 
Yeah.
 
Without having to pay anymore?
 
Yeah.
 
Okay. And do you find it quite easy to find what you need and what you want?
 
I do now, yes. But in the early days no, it was difficult. Once, now that I’ve got all my suppliers, it really is easy.
 
So what do you actually have to get, to have at home?
 

I have to have catheter valves, Instillagel, dressings, tube holders.  

When Faye's urinary problems started, she was in a lot of pain. She was in hospital for 6 weeks,...

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Five years ago, I just took ill. I was being sick and all sorts and they just started from there. I just went into retention.
 
So did you have any other symptoms apart from not being able to pass
urine?
 
I had pain the first time, but that’s it.
 
Whereabouts was the pain?
 
Over my abdomen, rather sharp and intense.
 
And you found it really difficult, what happened, could you pass any urine?
 
No, they put me on a lot of drips, so the hospital, to try and…
 
And until then you hadn’t had any problems at all?
 
Not one, no.
 
Was there anything you think might have triggered it?
 
No, just that illness, whatever it was that started it.
 
Tell me a bit more detail about on that day what happened?
 
It was a Saturday and I just woke up feeling sick and being sick. A fever, just really ill. So I went to hospital and it all started from there.
 
I' Gosh, that must have been an awful shock for you.
 
I can’t remember much of it to be honest.
 
You can’t. What happened when you got there?
 
I got booked in, painkillers, drips, took up to a ward, and a lot of it was just a blur ‘cos of the pain I was in.
 
And did they pass a catheter then?
 
No, they waited about twelve hours.
 
Oh. And then what happened? What sort of catheter did they pass then?
 
I don’t know. They had to hold me down.
 
Was it a urethral catheter?
 
They just did intermittent but they didn’t keep it in that time; they thought it was just a one off.
 
They passed a catheter into you every few hours did they?
 
After that, yeah.
 
So how long were you in hospital on that occasion?
 
I was in for about six weeks.
 
And what sort of tests and investigations did they do?
 
MRI scans, CT scans, blood, a lot; I can’t remember all of them.
 
Did they do any investigations of your bladder at that point?
 
None. Eventually I was sent home and they were just hoping things would go back to normal. And they didn’t.
 
And at that point you could pass urine?
 

No.  

Faye's urethral catheter would come out every few days and a district nurse would have to come...

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You say that you kept expelling it, it kept coming out?
 
Yeah.
 
Did they have any explanation for that?
 
They just said my bladder’s too unstable. It’s too overactive.
 
Overactive? Oh right. And what happened after that?
 
That went on for about, I’m not sure, maybe six months. It was coming out every day to every three days. I kept having to have it re-done until eventually the nurses got fed up of coming. So they arranged with the urologist for me to have a suprapubic catheter in.
 
When you had the urethral one, did they blow up a little balloon with water to try and keep it in position?
 
Yeah.
 
It still came out?
 

Yeah, it hurt.  

Faye had no time to think about changing from a urethral to a suprapubic catheter. Everything...

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Faye had no time to think about changing from a urethral to a suprapubic catheter. Everything...

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It [urethral catheter] was coming out every day to every three days, and I kept having to have it re-done until eventually the nurses got fed up of coming, so they arranged with the urologist for me to have a suprapubic catheter in.
 
When you had the urethral one did they blow up a little balloon with water to try and keep it in position?
 
Yeah.
 
It still came out?
 
Yeah, it hurt.
 
Right. What did you think of, were you involved with the decision to try to change from the urethral to the suprapubic catheter?
 
No I weren’t involved in it. I just got a phone call from the continence nurse telling me about how I were going in hospital the following Tuesday to have it done.
 
What did you think about that?
 
It had, it all happened too fast, I didn’t really have time to think about it.
 
What sort of information were you given?
 
None. Just that it would be painful for a few days afterwards. I had a pre-op but the consultant was too busy and just trying to work his way through patients, so all I did was sign a form and that was that.
 
So were you given any written information about it?
 
Nope. I were given the consent form, other things that could go wrong.
 
And you didn’t, did you have a chance to look up on the internet or find out anything?
 
No. With me already working in hospitals I knew what one was…….
 
So you came home?
 
I came home,
 
And since then what’s it been like having a suprapubic catheter?
 
It’s been a daily struggle.
 
A daily struggle?
 
Yeah.
 
Can you explain why?
 
Yeah. I’ve constantly got an infection.
 
Whereabouts? In the bladder or round about the site?
 
Yeah, in my bladder. And I just never know what one day from the next is going to be like, if I’m going to be ill or not.  

Faye often gets an infection. She has to be treated in hospital with an intravenous antibiotic....

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What’s it been like having a suprapubic catheter?
 
It’s been a daily struggle.
 
A daily struggle?
 
Yeah.
 
Can you explain why?
 
Yeah. I’ve constantly got an infection.
 
Whereabouts? In the bladder or round about the site?
 
Yeah, the bladder. Yeah, in my bladder. And I just never know what one day from the next is going to be like, if I’m going to be ill or not.
 
When you have an infection, how do you feel?
 
Just, apart from being ill, it just gets me depressed but I’m always feeling ill.
 
Do you get a temperature?
 
No, I don’t do temperatures with infections.
 
Just feel, how do you feel exactly?
 
Just really ill, I’ve got no energy. And pain.
 
And then what do you do when you get an infection?
 
I don’t know. I go to, I’m under the doctors most weeks as he’s always checking for an infection so I’m on antibiotics constantly.
 
Do you go down to your local GP?
 
Yeah.
 
And do they send a specimen off to the laboratory?
 
Yeah. And it always comes back as it can’t be treated with oral antibiotics. And so that’s when I end up in hospital.
 
It can’t be treated with other; you’ve tried all the ones.
 
Oral antibiotics, yes I’ve got to go in for intravenous.
 
Which antibiotics are you taking all the time?
 
Nitrofurantoin, is it?
 
Well we’ll check afterwards. And you say sometimes this doesn’t solve the problem.
 
No. It just masks the problem.
 
And you have to go back to hospital?
 
Yeah.
 
And have intravenous antibiotics?
 
Yeah.
 
And what’s it like having those?
 

Like I said before, it’s okay. I know the nurses, I’m not scared, I’m not worried about it. I know what’s coming. I just don’t like the feeling ill with it. 

Faye didn't want to be taught ISC by a male nurse. She found it hard to catheterise because of...

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Faye didn't want to be taught ISC by a male nurse. She found it hard to catheterise because of...

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I was seen by an urologist, and from then they decided that I ought to be doing intermittent myself. But I found that too difficult with my other problems with my knees and whatever, so the district nurses were coming out twice a day to do it.
 
So you went into hospital and they started any more investigations at that point?
 
No.
 
And who tried to show you how to do the intermittent catheterisation?
 
Nobody. I was just left, I was given a box by the continence nurse at the hospital and I was just left.
 
She didn’t show you what to do?
 
No. It was a ‘he’. And no he didn’t. I didn’t want him to.
 
It was a man?
 
Yeah.
 
You didn’t want him, no I can understand that. But did you not have the option of seeing a woman?
 
No, they said they was too busy.
 
Oh dear. So what happened then?
 
Well I did it a couple of times, it was painful but I still did it.
 
You managed it?
 
Yeah. And then I came home. It lasted maybe about a week before the continence nurses, the local team got in touch from there they put proper support in place.
 
You said that you found it very difficult to practice intermittent catheterisation because you have other problems. Can you say anything about what made it difficult for you? You said you’ve got problems with your knee.
 
Yeah, just bending, getting in place.
 
So did you manage it at all? The intermittent catheterisation?
 
I managed it maybe once a day. I just drank the bare minimal to get by, so I wouldn’t have to keep doing it. After that the continence nurse got in touch, the local one. And she put support in place for district nurses to come and see to me every day, it became twice a day, and then,
 
So they came twice a day, and they were passing a catheter for you?
 
Yeah. And that was all well and good, only not very good for my dignity….
 
And then how many years did that go on for?
 
That went on maybe about a year. And that stopped ‘cos I was going up to Scotland to see my brother and then I asked them to put in an indwelling catheter.
 
Was that a urethral one?
 

Yeah.