www.incontinentsupport.org

Well I hit rock bottom on Wednesday with a fall while getting out of bed in the morning. Legs would not move at all. My wife was having to help me change diapers and would move my legs up and down and help me change position. Hear in the UK the schools are off this week so she was very busy. At lunch time I phoned the doctors who gave me the phone number for the district nurse who after I explained the situation gave me the number for the catheter team. I had been trying to self cath all morning but was having a problem getting it in the last inch or two I could feel a vibrating coming up the catheter. At 3 pm two nurses arrived from the cath team who said straight away let's insert a foley. They were great very positive it went in fine after emptying a syringe of lube in my penis. They fitted it with a flip flow valve and left me with a bag stand and about 30 single use bags. I put the valve on free flow at the night and if resting on the bed. I managed to get my legs going after 36 hours and am now back to moving about the house with crutches. I am most worried about getting a UTI so am drinking loads. So far so good. They phoned from the cath team yesterday to say they will change the catheter on the 16th of April which is 8 weeks which seams a long time. I have a load of supplies coming on Tuesday including flip flow valves which I need to change every week. Just praying I stay infection free will let you all know how it all goes.

Hello Dave,

Wow, sounds like you are having a rough go at getting things started but it sounds like you are on the right track. Keep us posted on how the next few weeks go. I have always wondered about the first time a Foley is put in for longturm use. I have only talked to my doctor once about it but she felt it was something that wouldn't work well with me. She said with my type of incontinence that the muscle that stops the flow of urine is so weak that I would leak around the foley anyways and I would still be wet.
Best of luck and I hope thing keep going well and you stay UTI free.

Rope

Thanks for that Rope. I have just said to the wife I think this is a better option for me than diapers it's just the thought of infection that freaks me out. I have had indwelling catheters in before but only after my three major operations and only for about three days so this now is my longest time. I did not get any UTI while in hospital but I was always given at least two bags of antibiotics while it was back surgery so that would have helped. Thanks again will post again on Monday and let you know how it's going.

Hi 4wheeldave

I have been using a Foley Indwelling catheter for over four years.
At first I was plagued with infections for the first year but working with my doctor they have cleared up I been infection free for the last three years.
When I change my catheter I take Cipro an antibiotic for three days after the change. I also keep things very clean and drink plenty of liquids and last we went to a catheter with Silver Antibiotics impregnated into it.

Today I use a new type of catheter called the Duette. This catheter has two balloons one to hold the catheter in place and the second one is to protect the lining of the bladder it works fantastic.
I am sorry to say it has not been approved yet for England as far as I know.

One thing I am finding from reading England doctors are a lot more open to the use of Foley catheters than the US doctors are. I have a bad type of neuropathy CIDP and Autonomic neuropathy this is something like MS.
Neuropathy attacks the nerves outside the spinal columns where MS attacks the nerves inside the spinal column.
To me using a Foley catheter has been a good experience I don’t walk around in wet pads looking for a place to change no odor and the catheter and bag is easily concealed under clothing no bulk it is close to being normal.

I really hope it all works out for you please keep us informed at how well you are doing.
Incontinence is a very misunderstood medical problem.

Lyle

Will do Lyle and thanks for your input again. I agree with all you have said about wet diapers etc it feels really strange now to be using underwear again after so long. If I can stay infection free I want to continue with the foley especially in the summer as I always found pads a bit on the warm side. I have seen some reports on the foley with two balloons I will ask about it in the future and see if it is available in the UK. Thanks again.

I hope things go well for you too, but if you start to get infections it could be worth asking about a supra-pubic catheter. There are inserted into the bladder via a slit in the abdomen (while you are asleep, of course) and tend to be much less bothered by infection. I misused one for some 8 years without an infections at all.

I'm now using intermittent catheters as the bladder takes a good 800mls before leaking

Yes I agree a suprapubic one might the answer but like to get a year or two out of the foley first. I guess if I get a really bad UTI in the next few weeks I will probably be reaching for my diapers and screaming for the thing to be taken out. It's all going to be a learning curve at least I am trying new things now and then I can make an educated choice. Let's face it choices are limited but at least there are some. Glad you are managing with the intermittent ones.

wheels5894

I have talked to my doctor about a suprapubic catheter and I was told that down the road I may need one but for now I have been doing very well with a urethral catheter why change.

I suspect he is being a little cautious I have so many health problems and I am on so many drugs having an operation even a simple one becomes a nightmare.
I have to stop taking all the blood thinners I am on and some of the pain meds as well.
Every time I have a procedure done they will not do it in the Surgical Center any more I have to go into the hospital.
Even for my normal yearly Colonoscopy I use to have it done as an outpatient I now have it done in the hospital one night stay.

I have limited knowledge about a SP catheter just what I read.

But as for the ureteral Foley catheter it did not take me long to get used to it.
I have no real pain from it little spasms and no leakage.

4wheeldave

Using a Foley catheter dose take some getting used to it is a foreign object in your body.
When I had the first one put in it took several weeks before I was comfortable with it. It is not because it hurt or anything I guess because it was just there. Now I don’t even know it is there it feels comfortable.
When I change my catheter I will leave it out for a short time. This gives me time to take a long hot shower it feel good except I miss the catheter not being there and glad when it is back in me.

We have some of the same problems falling is one of them.
I am unstable on my feet I use crutches in the house and a wheelchair outside.
I can’t imagine falling with a Foley catheter in me OUCH.
My wife also has helped me many times it is her I feel sorry for she is always there to help I depend on her a lot.
(We I mean you and me) are lucky to have wives that can handle all this it is very hard on them also.

It does get better you will get accustom to it and find it easy to use it becomes part of your life.

Lyle

Thanks lyle for an encouraging post. This is my 6th day with the foley and i was beginning to wobble a bit wondering whether I have done the right thing and saying to myself diapers were ok and perhaps medically safer. I am determined to stay with it if I stay infection free I am not scheduled to have it changed for another 7 weeks. I am not aloud to change it myself I think that will always be done by the catheter care team that came out to me last week. It does sound that we are alike so far as our mobility is concerned but I don't have any of the issues you have with surgical procedures I was in hospital in December having a new wire put in place down my spinal canal from the implant I have. I never have any problems with anaesthetics or anything. It must be tough for you having these issues.
I know it's hard to believe but my kids I have two daughters age 10 and 13 don't know I have been wearing diapers for the last few years I have managed to keep it from them. That in itself has been a strain but they know about the tube I have connected to the bag at night and they have been fine about. Thanks again I will keep reading your post when I have doubts.
.

4wheeldave

You got a Foley because of retention if I got it right you were having trouble self cathing and could not relive your bladder.
One thing to remember you have to rid your bladder of urine so it does not back up into the kidneys that can cause all kinds of problems the worst is death. If urine dose back up into the kidneys it leaves you open to kidney infection much more serious than bladder infection and can cause the kidneys to fail then you would need dialysis.

If I have to be incontinent I find the Foley more comfortable than pads and I do not miss wet pads and carrying a diaper bag everywhere and having to find restrooms to change a wet pads. Now if my leg bag needs empting almost any restroom will do life became good again.
But one has to remember there are some risks to using a Foley.

Like you I have to wonderful grandchildren I adore who as far as I know never suspected I was using pads.

One thing I really like is not using pads we go to Disney World almost every year with our grandkids. Using a Foley catheter makes traveling so much easier.

Lyle