Sara

Age at interview: 60

Brief Outline: Sara has multiple sclerosis (MS). One day in 1999 she found she could not pass urine. Since then she has had a urethral catheter. She manages it by keeping it clean, drinking copious fluids, having bladder washouts and taking nitrofurantoin, citricidal and cranberry.

Background: Sara retired due to ill health. She worked within public relations, advertising, special events and exhibitions for the retail and charity sectors. She lives with her partner. Ethnic background/nationality' White British.

More about me...

After having symptoms for five years Sara was at last diagnosed with multiple sclerosis (MS). One day in 1999 she found that she could not pass urine, so had to have a catheter inserted so that the urine could drain from her bladder. Sara tried intermittent self catheterisation but could not manage it because her arms are badly affected by her multiple sclerosis. Since then she has had an in-dwelling urethral catheter, which is made of silicone. Sara finds that living with a catheter is quite comfortable and that it has made her life easier. The catheter drains continuously. Sara used to use her flip flow valve but now she cannot use her hands to turn it on and off. However, she still uses it when she has a shower. Her carers turn it off and disconnect her leg bag to avoid it getting wet. 

 

Sara has only had one urinary tract infection since the catheter was first inserted. She thinks that this is due to the way she manages her condition. She drinks two litres of water a day, she is very careful to clean her catheter and she makes sure that others wear gloves when changing bags or when emptying them. Sara’s partner helps her to wash out her bladder twice a week. Sara also takes the antibiotic nitrofurantoin every day. Every morning Sara also takes one capsule of cranberry juice and 5 drops Citricidal, a grapefruit seed extract. Sara is convinced that this routine helps to keep her bladder in good condition, and prevents infections. Every few years Sara goes into hospital as a day patient and has her bladder cleaned and stretched under general anaesthetic.  

 

Sara has a new drainage bag every week. The district nurse changes her catheter every six weeks. Sara has a number of carers who call during the day and who change her bag when necessary and help care for her. If her bag is not emptied on time Sara experiences ‘feed-back’ and can occasionally suffer agonizing pain. However, most of the time carers arrive on time and everything runs smoothly.

 

Sara describes how she does a bladder washout. It can be painful because her bladder has shrunk...

The Suby-G I use on a Wednesday and what you do is you take the catheter off the flip flow and you take that lid off there and you attach it actually to the catheter, not the flip flow. And then you push one side in and you leave it for five minutes, drain it out, push your second side in, leave it for five minutes, drain it out, put it all back together again.

 

To drain it out, does it just come out naturally or do you have to use a syringe?

 

No.

 

Just naturally?

 

Just turn it off, yes.

 

Oh right. And then on the other day of the week you use?

 

Solution R

 

Again, the same thing, squeeze it in?

 

Yes, with that one it is different because you squeeze it in (it’s a sort of concertina shape) and immediately release it and you do it five times. Now a lot of people don’t bother doing it five times.

 

This is the Optiflow?

 

Yes, a lot of people just do it once or twice, I mean I like five, or maybe if they’re good they might do it three times, but I do it five times. It hurts because it’s 500 ml, no not 500 ml, what is it?

 

100 ml.

 

100 ml there, and my bladder has shrunk so much I can hardly get it in me but it hurts, but its okay. 

Sara was told she was drinking too much for her bodyweight. She felt uncomfortable when she drank...

I drink the requisite 8 glasses (250ml each) or 2 L per day. You can actually drink too much, which can cause problems with other internal organs, don’t ask me which ones. When I went to an MS Society meeting one time, the incontinence nurse told me I was drinking too much for my bodyweight and suggested I tried reducing it. I tried this but didn't feel comfortable. So I reverted to type. 

 

I used to panic when I was under drinking the requisite amount if I was out for the day or involved with meetings, but I don't worry so much now if I am a bit under. 

 

When I was young and active I drank nowhere near this amount but now I feel comfortable, but I do need reminding when I'm busy on the computer. I used to have reminders on my computer that came up at set times. 

 

A district nurse changed Sara's urethral catheter. The nurse used a little Instillagel to numb...

So let’s talk about changing the catheter now. You said the district nurses do that. Would you mind just explaining what happens when you have your catheter changed, somebody might be worried about that?

 

Yes, they come in and they put me on my bed with a slide sheet on it because obviously that makes it easier for them, and also a towel. And I use a Sarita, which is a stand hoist. And, because I’ve got the power in my legs to stand, I don’t have the power in my legs to walk, so they are then able to pull my trousers down. If I had to be in any other sort of hoist to get me onto the bed it would be that much more difficult with having trousers. And they put my legs up, pull my knees apart and off they go.

 

And would you describe that as uncomfortable or not?

 

No. I’m so used to it now and there are some people who are good at it and some people who are not so good at it. However my team, for want of a better word, are pretty good and they also give me some Instillagel to numb me a bit, in the relevant places. 

 

They obviously clean me up. They know how I wear my G strap and my catheter and my flip flow, so they are always careful to ensure that they put it in correctly to achieve this. Yes, it’s good.

 

And do they bring the new catheter with them or do you have to get one?

 

No, I have them here. I have everything that I need here because you never know when something might go wrong and you have to call out one of the emergency girls in the middle of the night or something like that. They won’t necessarily have all the equipment with them.

 

Sara's GP writes her a prescription and all her catheter equipment is delivered to her by her...

I have everything that I need here because you never know when something might go wrong and you have to call out one of the emergency girls in the middle of the night or something like that. And they won’t necessarily have all the equipment with them. 

 

And where do you get all your supplies from? 

 

My doctor writes a prescription for me. So that all works. 

 

Do you have to send that somewhere or can the chemist get it for you? 

 

No the chemist delivers it. 

 

Oh good, so it’s not too difficult? 

 

No.