[wheelysneakycat]

Hi,

First time posting here with some questions on suprapubic catheters. First I should say that I am a wheelchair user with no use in legs and hardly any in

one arm. I have never had a diagnosis for this condition which I've had for 18 years but I've come here because I experience a lot of the same issues

that those with SCI do, and have often found sites like this the most helpful in the past; I want to talk to people who are experienced in using

suprapubic catheters to get some help/information.

I've had my spc for nearly a year. So far the district nurses have been changing it for me but I want me/my carers to do do it instead. I tried to get

this across to the nurses last time they were here but I think partly because they're just not that good at listening and partly because I'm also blind and they probably don't think me/my carer can manage between us they didn't really answer my questions. So I want to be confident I understand the procedure of changing the catheter so next time I'll *tell* the nurses I'll be doing it alone soon and they can help us get confident with it. I also have some general questions about the catheter because I've never really been given that much information and nurses don't seem that bothered about telling me things.

So...

1. Is there any generally agreed length of time the catheter should stay in before it's changed? When I first had it done the nurse told me every 8 weeks but from what I've read here it varies. I will probably stick to eight weeks but just wondering. Also there must be an agreed length of time after which it really *must* be changed? The nurses didn't come when they were supposed to last time because of snow and it got to 10-11 weeks and I was getting very worried but perhaps I was worrying about nothing. I wonder what is the absolute limit?

2. As far as I understand it the procedure of changing the catheter goes like this: gather together syringe, wipes/something to clean the area with, sterile gloves, bag/bin to put rubbish in, gel, new catheter and bag. Wash hands and put on gloves. Attach bag to new catheter. Put syringe in the (what I call small tube) of the catheter and empty the water. Pull catheter out slowly, it might be a bit stuck, keeping fingers in same place so you can see how far to insert the new catheter. Wipe/clean around the area. Take gloves off, put new ones on. Dip new catheter in gel to the depth it will be inserted. Hold it at the same place/level you held the other one so you insert it to same level. Slowly insert catheter. Wait to check it's draining. Then if the catheter is prefilled, release the balloon and allow it to go in; if not prefilled insert syringe in small tube and inflate balloon. Is that right? Am I missing anything? I do have some questions about it:

3. Is it absolutely necessary to wear gloves if you've washed your hands thoroughly and put antibacterial gel on them? I ask because I am hoping to do the taking out, cleaning of area and insertion of new catheter myself. Because I'm blind I really like to feel what I'm doing and gloves make this difficult; also because I only have use of one hand getting gloves on/off is quite difficult. Of course my carer will be there and do certain parts of the procedure so they could either do this part or put gloves on for me but it would be a lot easier without gloves so I'm wondering...?

4. When you insert the new catheter what does it feel like? I mean I'm wondering how much resistance to expect/how hard I need to push. Sometimes when the nurses put it in they say to each other they're getting quite a lot of resistance and I'm wondering what "quite a lot" is; can it be compared to anything else? Also is it possible to push it into the wrong place? I heard a nurse who works in hospitals say that a lot of nurses won't insert suprapubic catheters because they say you could put it into the liver by accident. Is this true?

5. At the moment I have prefilled catheters. I don't really understand how they work. I did look at/feel one (without inserting it) to understand it. My carer released the catch keeping the balloon in place and the next thing I knew it was at the other end. It seemed to zoom down there. Last time the nurses did it the one watching told the other one to put the balloon in slowly. Do you do this by keeping your fingers in front of the balloon so stopping it move so quickly? I still don't understand how it goes through the hole into the bladder because the filled balloon seems so big and it doesn't come out the other way without being deflated.

6. Still on prefilled catheters, what are the advantages of using these rather than not filled? It seems to me it would be easier to use ones not prefilled as I/we wouldn't have to worry about slowing the balloon's movement down. I do wonder whether the balloon entering through that small hole would cause damage over time?

7. When I first had the SPC put in the district nurse set me up with Charter Healthcare and I just phone up and order the same catheters I've always had. But a couple of things they've said about the one I'm using have got me thinking. Apparently mine is a male catheter. I don't actually know what the difference between a male and female suprapubic catheter is. Can anyone tell me? As I am a female, shouldn't I be using a female catheter? Also apparently mine is latex. I had the general impression that they try to avoid latex these days in case people develop allergies to it. There are other catheters made of silicon. Why would someone use latex rather than silicon? I have the general idea "if it ain't broke don't fix it" but I wonder why I'm using latex and not silicon...

8. Anything else I should know/you think I'm missing?

And that's it for now I think! Sorry for such a long post but I want to understand as much as possible and it's really helpful to talk to people experienced in these things...I hope I can understand fully so me and my carers can do this ourselves soon and not be messed around by the nurses. They don't tell me what time they're coming (not even a rough idea) which is disruptive; also twice in a row they have tried to insert the catheter into my belly button and didn't even listen to me when I told them to stop/put my hand in the way to stop them...oh yeah, and then took that catheter probably full of germs from my belly button and put it straight into my bladder...hmmmm...

Thanks for any help you can give for my questions...
Catherine

[allis53ca]

although i have no experince with pre-filled, i change my own sp...sounds like you have the procedure down..i dont wear gloves, as i have no hand function and the gloves just make it too difficult...as to 8 weeks, i change every 4 because i get too much build up in it and it will start to clog at 5 or 6 weeks...feel free to pm me if you have any other Q's

[wheelysneakycat]

Hi Debbie,

Thanks for your reply. I'm feeling pretty confident theoretically how to do it now but somewhat nervous about actually doing it. This nervousness is made a lot worse by the fact that yesterday the nurse told me (after turning up without letting me know they were coming) that she thinks I'm "not allowed" to do it myself. So they're coming back again tomorrow (I was on the way out when they turned up yesterday) and I'm going to phone today and tell them that tomorrow me/my carer will be doing it with the nurses' assistance/guidance as necessary. See what they say...not sure if these particular nurses are just unaware (it seems from looking on this site that it's normal for people/their carers to change the catheters); or whether they've decided that because I'm blind/only got use in one hand or whatever that I'm "not allowed" to do it...we'll see...

Ah - re the belly button - yeah, the problem was they took the old cath out, put some sort of sheet over the stoma, prepared the new one then turned round, saw my belly button/forgot they'd covered the stoma and just tried to put the new cath into the thing they could see - my belly button! Not confidence inspiring...

Catherine

deb4604, on Mar 10 2010, 12:12 PM, said:

Good luck to you. When I read the part about about the nurses trying to insert it into your belly button, I thought what the heck??? But after sharing your posting with my bf, he too said someone tried more than once to do that to him! Amazing!

[Tetracyclone]

Catherine- steel your mind against negativity and these BS control trips nurses try on you. It is the classic scenario where they see you are vulnerable to doubt, so they attack. People often think it is more important to be the alpha in the room than to serve their patients, and with those folks you just have to make yourself more intimidating. i have no doubt you know how to do it. Have FUN!

For contrast, in Taiwan where i rehabbed nurses considered it their job to teach patients and carers to do all the changes, not to do the caths themselves. It did not matter to them if the caretaker was a Malasian girl with no Chinese, they would teach with sign language and gestures.

[wheelysneakycat]

Thanks Tetracyclone, reading your posts and the support from others here is helping/making me feel a bit more confident. Today they are coming and I have no doubt they'll say I'm "not allowed" but I have downloaded an NHS leaflet which clearly states that patients/carers can change their own catheters if they are shown how so I'll see what they say to that. I also am making a formal complaint about their lack of communication, trying to put the catheter in the wrong place and not helping me learn how to do it myself.

If they argue today I'll let them do it but my carer will watch carefully to see what they do and I am protecting my belly button! But I am continuing the complaint and trying to build up evidence that it's fine for patients/carers to do it themselves.

If anyone knows of any leaflets about SCs which mention patients/carers doing the changes please let me know what they are/where I could get them. It's possible the nurses here are just inexperienced and don't know that is the norm. The more evidence I can shove under their noses the better. I've said to them that I know for a fact people do it themselves, but I daren't mention this website as you know what it's like when you tell people you "read it on the internet" - they'll probably think it's nonsense/that I'm vulnerable.

If it came to it and was the only way, I'd pay a nurse who was experienced in this to come and be here while I do it for myself for the first time. I'd rather have someone helpful than be fighting all the time. But I don't know how to start looking and it's a bit daunting; also these District Nurses are being paid from public money, I've paid my contributions and they are supposed to provide me with a service.

Thanks for all your support people.

Tetracyclone, on Mar 11 2010, 01:42 PM, said:

Catherine- steel your mind against negativity and these BS control trips nurses try on you. It is the classic scenario where they see you are vulnerable to doubt, so they attack. People often think it is more important to be the alpha in the room than to serve their patients, and with those folks you just have to make yourself more intimidating. i have no doubt you know how to do it. Have FUN!

For contrast, in Taiwan where i rehabbed nurses considered it their job to teach patients and carers to do all the changes, not to do the caths themselves. It did not matter to them if the caretaker was a Malasian girl with no Chinese, they would teach with sign language and gestures.

[Trinity]

Maybe try talking to a continence nurse would be beneficial, also using terms such as "patient empowerment" may help!

Ask them for some training such as what to do in an emergency if the sp cath comes out or needs to be removed in a hurry, someone should know the procedure to replace it as it needs to be done pretty quickly and a trip to A&E may mean that the stoma has closed over and insertion may be traumatic or impossible. Also what are you supposed to do if such an emergency happens when you are on holiday?

I would be curious as to the answers they come up with.

My money is still on a continence nurse as opposed to the DN's. There phone number should be available from you local Primary Care Trust (PCT)