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I have a decompensated bladder,which has lead too urge,overflow incontinence.My urologist has me using a Foley.Wondering if anyone else here has this type of bladder issue,and how they are being treated

Hi welcome to the board
I don't have anything for you as far as what your talking about. My incontinence issues is all of the above and then some But I'm sure one of the boys will jump in here and talk with you.......................Sandy

Thank you Sandy for your warm welcome,and understand your issues too,are you currently using a Foley?

Lynnan: I never heard of decompensated bladder so I looked it up and it appears to be the same as my incontinence which I was told is a flaccid bladder with retention I cannot urinate on my own. It is the nerves that control the bladder don’t get the massage to empty.
From the test I had my bladder would hold between 1500ml to 2000ml of urine before it would release or overflow. My problems are due to autonomic neuropathy which destroyed the nerves to the bladder.

I also use a Foley catheter and have for a year and half now.

2lyle

Hi 2lyle
Yes,.I thought it was a bizarre term,so I requested all the Dr's dictation,and everyone of these reflected this term,and yes,I would assume it's a flaccid bladder,or "worn out bladder".And yes,I was retaining those amounts like you were.Are you also incontinent?I assume you are better with the catheter? Did your Urologist want you to self cath at first? Here,I was self cathing,but started having to get up during the night to self cath,then my Dr realize it was time for the Foley.That was several months ago.Are you seeing any changes since the Foley? Do you insert,or go in for insertion? Here,I know how to insert,but they keep me coming back for that.
Regards,
Lynnan

Hi Lynnan: decompensated bladder is a correct term from what I read it is just another way to say flaccid bladder.

Yes I am incontinent I have CIDP and autonomic neuropathy I have little to no feeling. When the bladder gets to somewhere over a 1000ml to 1500ml it just lets go and I cannot stop the flow I lose around half before it stops.

Yes I did self cath for several years but neuropathy has affected my hands they don’t always do what I want them to do. My doctor wanted me to start cath every three hours 24/7 day and night.

Like you I did go to my urologist for a catheter change but at my last visit he wanted me to start to change my own and today was my first attempt at it it’s in. His prescription gives me four catheters and four insertion trays every month. Good thing I dropped the first catheter and tore the serial glove glad to have backup.

A Foley dose make me feel better physically but it also gives me a lot more freedom which my wife is happy about we do a lot more with our friends.

How long have you had a Foley?
What type of Foley are you using be it rubber coated with silicon or an all silicon catheter?

I started to use an all silicon catheter coated with silver.

2lyle

Hi 2lyle,
It appears we are the same,and he thought maybe a bladder neck incsion might help me pee easier,but he feels I'm to far decompensated,and I understand that.
Did you request the foley catheter or was it your urologists idea.Here,I have been asking as I was self cathing,as sometimes with my work it was impossible to self cath,but with my nightime voids he did see it was best for me.Self cathing might work for some,but when you work and have to get up to self cath,it really beats you up the next day. Here I was given 3 catheters for 90 days,or one per month,so you must have a great insurance,I live in the US.
Have you heard any fix for this where your located? Nothing here. Are you noticing any effects from the Foley? I'm noticing when I have it out for a while inbetween changes much more incontinence and urgency,I suppose the bladder is much smaller.I have had the foley inserted about 6 months
Regards.
Lynnan

Lynnam

With more reading I do think we both have the same problem by different names which are normal for medical terms.
So far my urologist has not recommended having bladder neck incision or anything else. In my case there is not much that can be done the nerves to the bladder neuropathy has destroyed so all that can be done is just controlling the incontinence and drain the bladder so it does not back up into the kidneys.

I don’t know what caused your problem but like I said mine is neuropathy this is something like MS for better words it attacks the nerves.
As for who wanted a Foley that is a long story
My neurologist several years ago prescribed a Foley catheter. I have IV therapy every three weeks. My neurologist wanted me to use a Foley catheter during the IV therapy to help with some of the fluids that build up from the IV. I then ask the neurologist if I could use a Foley catheter for traveling he was reluctant but said OK but remember this is a neurologist not an urologist. The first time I used the catheter it was put in by my IV nurse and she got 1500ml out of me and through a fit and called the neurologist but nothing was done at that time. I did continue to use a Foley for four days a month.
At one of my visit with my neurologist I saw his Nurse PT and I had briefs or diapers on she did not like that at all “the stigma of diapers even with the healthcare people”. After many question about my incontinent she sent me to an urologist that is when I found out I had a flaccid bladder.
I self cath for several years but I was having a hard time doing it and he wanted me to start cath day and night so I asked if there is something else that can be done.
He reluctantly said using an indwelling was all he could do so came the Foley 24/7 into play.
At my last visit I ask him again if there was something else I could try and if he wanted me to stop using the Foley I would go back trying self cathing.
He then said I am doing so well with an indwelling catheter I probably should have had it much sooner and I should stay with it.

You only got three catheters for 90 days?
The old Medicare guidelines was four every month but now Medicare will pays for 200 a month use them once and through them away.
The first neurologist gave me four every month. I did not like that urologist not because he did not know what he was doing but I just did not like him and I wanted a second onion anyhow.
My new urologist after he found out how many infections I had he ordered 200 catheters a month. The catheter was a completely enclosed inside of a drainage bag it was a sterile self-contained in and out cathing system. I got 200 catheters every month.
And now after everything else has been tried then came the Foley. My urologist did mention down the road I may need a Super Public catheter put in.

I have not had the catheter out long enough to notice much one out and one back in in less than a couple of minutes. When I started to use a Foley I did noticed how much better I felt.

I also live in the US and I also have good insurance you need it when in today’s world with medical cost keep going up and up and up.

2lyle

Urologist told me I was born with a nonmatured bladder,and inherited from my father,as bladder issues were on his side.He told me it was to bad you werent seeing a urologist from a young age,and yes I would have had to continue my whole life,but life would have been easier for you,and your bladder wouldnt have become so decompensated,I also have a very tight bladder neck,and he told me the bladder neck and bladder do not work together.
The first few times I met with him,he thought he could solve my issues easily,and even commented will get you out of diapers for sure.And I will admit he has really tried.I do like him and his staff,they are very good to me.
He found out in Jan of 2011 after a cystoscopy,that I have the above.
To clarify,I was scripted I think 200 self caths per month,when I was using them,and now with foley catheters 3 foleys for 90 days,changing them once per month.
Also my GP had already despensed foleys to me as when I traveled he told me it will be much easier for you.And my urologist agreed to that.
But last year I started have some severe retention at night for some reason,and he also recommended I do a sleep study,which I did,and found out I had sleep apena.He did order me to use Foleys then and have since then
I have no idea if he will keep me on Foleys or want me to go back to self cathing.I havent had any issues with the Foley,in fact much more comfort and able to depend on them.Yes I still have leakage,but its much better then getting someplace and needing to self cath.
Did you say you have been scripted 4 foley catheters per month? If so you mentioned you have had some infections so they want you to change out weekly? Here,they insert and leave in till the next month,havent had any infection issues
Lynnan

Lynnan: it sounds like you have been put through the ringer also.
Our problems are very similar my bladder will not release on command the nerves to the bladder for a better word, are dead.
Neuropathy like I said is something like MS both are an autoimmune disease. MS destroys the nerves in the spinal column neuropathy destroys the nerves outside the spinal column.

I wish I could say I’ve not had infections I was getting them every month. They were not bad but I keep a close watch on thing and as soon as something would change I call the doctor for a unary test so they were cough early.
Even with the infections using a Foley catheter is more than worth it. I do everything I want and it gives me so much more freedom. My wife also like it or the idea of it we go out with friends a lot more and when we travel all my supply’s I need for the trip fits into a small carry bag.

The last two months I been infection free we made some changes.
First I removed most of the hair that comes in contact with the catheter.
Second I don’t change bags between leg and night bag. I went to Conveen leg and night bag it holds 1500ml. it holds enough for night and I do like the bigger bag during the day also.
Third we went to a silver coated catheter that is an antibiotic. The coating is supposed to stop infection from sticking to it thus stopping infections from starting.
Forth I take antibiotics for three days after a catheter change.

I am prescribed 4 catheters and insertion kits every month. This is not what one would think I only use one every four weeks but my hands are bad so cathing is hard for me but not impossible.
I just changed my catheter and I dropped the first one then ripped the sterile gloves so I was glad I had backups.
Also if I get a bad infection and he wants the catheter changed I will have one on hand.
I don’t see him for six months and this is so much cheaper than going in his office every month for a catheter. Change catheters and insertion tray are not that expensive.

I am like you when I was working I was a maintenance machinist millwright I worked for a large company. I rebuilt large machinery I had to clime or crawl inside of machinery preform my job. If a gear or something was broke I also had to be able to machine a new one. I also had to travel to other parts of my company to repair machinery. In the building I called home there were over a hundred people there was no way I could get away with using diapers. At that time I used a condom catheter it was easy to hide.

You said you have some small leaks.
What size catheter are you using?

I started off with a 14f with a 5cc balloon then to a 16f to an 18 to a 20f then back to an 18f 5cc for comfort. The only leaks I get are if I push hard on my abdomen.

2lyle