www.incontinentsupport.org

I just joined this sight but I am a long time user of the old IRC.

I have a long history of incontinence and I used everything from diapers to external catheters to self cathing and now a Foley catheter full time.
I was diagnosed with a flaccid bladder with retention I have CIDP and autonomic neuropathy which has destroyed the nerves to the brain.
Even if I feel the need to urinate which is seldom my brain either does not get the message or it does not respond so I would hold on until leakage would accrue and I would void up to 1500cc of urine.
I went through a year of self cathing and doing quite well with it but then my hands got so bad I was hurting myself to much so now the Foley catheter for the past year and half.
Several months ago I had the Foley catheter out for one of the worse month I ever went through and found out I could never go without a Foley or a supper public catheter my bladder has shrunk I hold less than 100 to 200cc.
There are a lot of problems with using a Foley one being after five days after it is put in there is always infectious colony’s that form witch can turn into full blown UTI’s which I get almost every month. Second and the scariest is with long term usage it can cause kidney failure sepsis and or cancer it is a serious decision for anyone to have to make. I was told of everything that can go wrong and the final step I had to agree to use a Foley.
As much as I spoken how bad using Foley catheters are I am now using them full time how life tricks you but I still going and able to travel some and for me it was a wise choice.

Lyle

Lyle,
Welcome to the forum! It sounds like you're sold on the self-cath method to control your incontinence. Most people on this board who have tried that, went back to a diaper. If you're satisfied with it, that's great for you. The only time I've ever been cath'd it was due to a hospitol stay. Not too comfortable to me. I prefer just to wear a diaper. Good luck with choice. ...Paul Martin

Hi Paul

Thanks for welcome to the forum.

I think you have it wrong I don’t self cath anymore my doctor has prescribed a Foley catheter I now use an indwelling Foley catheter it is a permanent part of me now. I am not sold on catheters in fact I hate them but it became necessary some times.
Self cathing or indwelling catheters is meant for people like me that cannot urinate on their own doo to dead nerves to or from or both the brain. First in my case I never or seldom get the urge to urinate even if there is 1700cc in my bladder I have no feeling. Second even if I get the urge or see my belly grossly extended I cannot stand or sit over the toilet and pee. I cannot pee the spanner muscle never gets the message from the brain to open thus the need for a catheter.
Foley catheters and self-catheters are restricted by law only given on a doctor order.

Lyle

hi lyle,

welcome to the forum. i myself am a catheter user although i still use diapers for a chronic condition.

don not everyone is diaper dependant and incontinence covers a vast load of medical conditions including catheters and stoma etc.

i came here with respect of looking for support for both incontinence and catheter use and hope that your forum will support these vast incontinence conditions.

lyle if you need support then feel free to p.m me although i hope the moderators will do this.

mike

Hi Mike

From a post you made a while back I see you use a SP catheter.

Using an indwelling catheter one of the next steps for me could very well be a SP catheter. I can’t say I’m liking the idea but it been suggested by my urologist at least it is down the road.

When I rejoined this group I did not expect much support I knew that most here are diapers only. It is hard to get anyone that knows much about the need for indwelling Foley catheters and SP catheters and self-catheter. There are many, many people that are incontinent that need help in urinating and use these type of catheters for many different reasons.
All one has to do is watch TV there are commercials about self-catheters and all catheters needs by Liberty.

In my first post I said I cannot release urine on my own. My urologist told me of my choices and all included a way to drain the bladder and all bad and can cause UTIs.

When I became incontinent I also used diapers back before disposables were around for adults so I have both sides of this issue. I still have some bowel problems and still use pull-ups 24/7.
I still have 3 to 5 dozen new cloth pre-fold diapers and maybe 50 to a 100 waterproof pants left and 9 cases of molicare disposables so I have some idea of everything.
But after I had this Foley in for so long I don’t know if I could or would want to go back to diapers.
When out of the house I do use a wheelchair either manual or a power chair so using a catheter is so much easier and easier on my wife also and it does not show people have no idea I am incontinent unless I tell them.

Lyle

hi lyle,

it is so nice to find another catheter user and i am sure that there are a lot more on here.

i think there are quite a few things which scare people from using catheters such as pain, infections, etc. like everything there are good and negative points. when i was using disposable diapers my skin deteriorated so even those have down sides.

years ago i was told that i would have to have an indwelling catheter but been in a active relationship i turned it down flat so carried on using diapers. at that time i was given no choice of spc and this led to complications further on.

from what i understand you are in retention and if you go down the line of spc then you will need to keep on top of infections having a open wound, spc normally take up many months to settle down.

as for support, i hope that you will get the support from users on here and you have my support,

when i was in hospital it blew my mind just how many young people are using catheters,

take care and please keep in touch,

michael

Catheters are well know to me. My bladder usually lets go when it gets full. Diapers are what I use because of the flooding and bowel leakage. On really bad days my bladder suffers retention and I have to self-cath until I can get my back to settle down and pop back into place.(sliding vertebrae). I have had a foley and it was not very comfortable. I would get spasms and leaks.

Welcome aboard the forum.

_________________
When life hands you a lemon, make lemonade.

Hi Mick

Please do stay in touch

I hope I never have to go to a supper public catheter (but it may become necessary a cording to my urologist) as I have UTI.s every month now. I am on antibiotics now for a UTI. This just goes along with using the Foley catheter.

Neuropathy is an autoimmune disease my immune system is being compromised.
It is farther being destroyed or compromised by the IV treatments I receive every three weeks. This is what my neurologist wants. It is the immune system that attacks the nerves destroying the Milan-sheath that protects the nerves. It is believed that by compromised the immune system the system will try and take care of itself and leave the nerves alone. I start my next round of IV Nov 31.

Lyle

Hi SeattleDoug

You are lucky still being able to self cath only when needed and void when full.
When I get full I cannot void the spanner muscle just not get the message and will not open thus the Foley.

I.ve have had a Foley in for well over a year now and I can’t say it is uncomfortable I don’t even know it is there, the good thing it gives me a lot more freedom than diapers ever did.
I put my time in diapers and self cathing but my incontinence neither of these will keep my bladder empty. My hands make self cathing very difficult so my urologist gave me the options and I went with the Foley he agreed.
If I have one gripe with it is the UTI’s I have one almost every month.

As for spasms there are medications to help such as Detropan.
When I first started to use a Foley I had spasms my doctor put me on Detropan and it worked.
I use pull-ups over the catheter for bowel problems.

Lyle

Lyle,

Welcome to the board. I am incontinent due to nerve damage. Like you I just don't feel the urge. The big difference is that my bladder does not retain much urine before it releases meaning I release small amounts. My mother suffered with MS for over 30 years. The last 15 plus years she had a foley. She would suffer through UTI after UTI. She was unable to care for herself and after my father's unsuccessful trial at using diapers her doctor suggested the foley. Other than the UTI's the foley worked well. I am an active individual so using a foley at this point in my life just isn't an option. Years ago I used a condom cath for sleeping but ended up with more of a mess than I had with diapers. I have nothing against the use of caths or diapers to manage incontinence. Everyone's circumstances differ and whatever management method works the best then it should be supported here.