www.incontinentsupport.org

Sorry I'm a little late getting back to ya No I don't have any issue with peeing my issue is I have very little control when it comes to that. For me in my situation I've always been against inserting anything into my body (tampons included) So I manage my incontinence with full blown tape on diapers 24/7 .........................Sandy

Hi 2Lyle,
Yes,I agree we both have been through the ringer,but I'm glad I'm finally dealing with this,as my Wife has been on me for several years saying I need to go to a specialist,finally when I talked to my GP,it didnt take long for him and then his nurse to convince me that I really needed to see a urologist,something was wrong.The nurse told me just call me and I will line everything up for you,send your records,and what scans we have already done.Actually between my wife and the nurse,they were the ones that got me going.I'm thankful for both of them.When I got to the urology clinic,it was like I had been there before,it only took me a few min of paperwork and I was in a exam room with a nurse.(my GP nurse had really got the job done).Once in and some questions they knew what was next.
The Doctor thought at first that Vesicare and Flomax will fix me up,come back in a month.The retention was kept on even thou with the meds given(still taking Vesicare and Flomax),called the nurse,told her really having trouble with peeing,she said can you come in that day,I said yes,went in and cant remember the metric amount,but retaining 13 oz.so off to the cystoscopy room,there the diagnosis was made on the bladder and bladder neck.
Since then went back in last fall for full retention, at night,man that was awful,so that is when the foley started,like you,I felt much more control of myself,even thou the Foley was deciding things,least I wasnt caught someplace where I needed to self cath and couldnt.

Currently by mistake,the company (everyone knows this one that caths) sent me 18fr instead of 16fr,and I'm leaking alot less.But still need protection,and my nurse told me lots of foley cath patients use something to be safe,,I would have thought by now I wouldnt have spasms,but still do.
I havent had the talk yet about a suprapubic,but I assume it will come also like you did.I really dont want to go there,but I assume the time comes.
As one friend told me,you can look forward now to a lifetime of urology app,as it will be a part of your life with what you have.So I assume so.
I love and use a belly bag,wow,that is real freedom,insurance wont pay for them but,I dont care,I like them so much better then a leg bag.I know one thing,people (nurses especially) notice the hose going down to the bag,do I care,yes,I kinda still do.
Regards,
Lynn

Hi Lynnan

Its scary your experience with incontinence is so close to mine it’s hard to believe.

I did try the Belly Bag and loved them but at the time I was having infections and my doctor blamed the Belly Bag he does not like them. It was the first thing we changed he prescribed the traditional leg bag changing to a night bag at night well the infections continued as I said in the last post the changes that we made.
So far with all the changes we made I been infection free for the last two months.

I guess if someone looks close they could see the tube going to a leg bag but so far no one has said anything. The bag I use has the tube attached and it is smaller than most you really can’t see anything.

You are right insurance will not pay for Belly Bags and they are expensive and my doctor wants me to change bags every five to seven days. The bag I use is cheap I think it is around $4. The bag is big enough I use it for both day and night no more changing they hold 1500ml. insurance is paying for everything.

I been lucky I have no leaks to speak of since we went to the larger catheter 18fr and the 20fr was even better but the 18 was more comfortable to me. It is normal to have some leakage but a small pad should take care of it. Like I said I been lucky the only time I have leakage is when I push down on the abdomen forcing it.

You are having spasms I don’t but I am on Dipropan and have been from the start. He says it will keep me from having spasms.

Do you use Neosporin or another antibacterial salve where the catheter enters?

My doctor told me to and he said don’t be afraid if some gets on the catheter.
But reading on the net if your catheter is rubber if it gets to the balloon it could break it. I use an all silicon catheter so the salve is not supposed to do that I been using Neosporin ever since I had a Foley.

Supper Pubic catheters may or may not be needed I guess it all depends on how your urethra holds up from the Foley. From what I heard talking to several people with a Supper Pubic just about all of them say it is much more comfortable and less infections.
If my doctor wants it I would go for it.

I also think there will be a lot of doctor appointment in the future. With my disease renal failure can happen that is why my neurologist is so concern about my incontinence.

2lyle

Sandy

You are probably the smartest here not wanting anything in your body.
I know we talk about catheters and how great they are and I do like them much more than well diapers.
But there are a lot of problems that can go along with them the worst is cancer.
People that use indwelling catheters long terms have a greater risk of bladder cancer and of course infections some can be serious.

But in our cases there is a greater risk of problems with retention and urine backing up into the kidneys.
So I don’t know which is worse the catheter or renal failure.

No one should use a Foley catheter if not needed.

I also have a Med-A-Port it is a direct access to a vain and some of the problems that goes along with a Foley also goes along with the port. I am caught between a rock and a hard place.

2lyle

I hope you don't think I was down playing catheters Because I wasn't. I was only using myself as case in point. I fully understand why some people need them.
..........................Sandy

Sandy:

I never though you were downplaying catheters.
We all use our self’s for an example that is what this support board is about.
We all share a command problem incontinence most can get away with diapers or a male can use a condom cath but a few of us don’t have an option but a Foley catheter.

I do use diapers on occasion but not for urinary but bowel the worst type of incontinence.

2lyle

Hi 2lyle,
Yes,I feel the same,our issues are very close,what many do not understand is we must use a catheter otherwise we will have kidney issues also.
The Belly Bag is wonderful,sure there are faults to it,but they are small,yesterday I went to visit my Mother in the nursing home,and wore a leg bag to give my skin a rest around my tummy,and yes I might have had the straps a bit tight,but by the time I got home,it really hurt,and yes,I'm not use to having it there either.
I have asked my nurse several times about my leaking,and in a nutshell its ignored,she told me the Dr wants me to stay with the 16fr,I think next month when I go in I will direct my question again.I'm on Vesicare,once per day,and Flomax 2 times per day,so you can see they are throwing alot at my spasms,and still having them,I really dont want to go on more medication either.
I have never used Neosporin,I havent had infections issues yet,but will ask about that,only think I do is wash this area 3 times per day and apply lubricant so the catheter can slip easily.
I havent used a silicon foley yet,but might try it sometime.
Do you need to irrigate often? Lately I have been having trouble at night,and had to get up and irrigate,to get the gunk out of the foley.
I'm not ready at all for surpapubic,hope he doesnt bring that up yet.
Do you wear regular shorts with your foley? I need to wear a pullup,and the nurse told me lots of people do.
Regards,
Lynnan

Hi Sandy,
I know wearing diapers fulltime is "no picnic in the park" either,as even thou I have the foley inserted for the retention I need to wear a pullup along with it, for catheter leakage.Hopefully we can get that fixed sometime.
You being incontinent,I know you understand all of this and the reason behind what Drs order you to do.
Sandy,do you have stress incontinence? I have some friends that have that,and other urge also.
Lynnan

Howdy lynnan
I have it all I'm always dribbling here and there. If I sneeze cough laugh squat lift those will all cause me to let out a squirt other wise known as stress incontinence. I get sudden urges from time to time that give me seconds to respond or it will all come out anyway. So I've gotten to the point of just letting my diapers handle it rather then stressing to find a restroom. I have other times where I'm sitting doing nothing more the typing on the computer and feel a sensation "How should I say" my bladder may be filling up? But if I try to get up it will all come out anyway whether I like it or not So just let it do what it will do. I have no control at night what so ever Really I've gotten to the point where I don't get stressed out about it I just let nature do what it's going to do and go about my day/life

Many may think of what I go through as a curse but I don't. It's just part of who I am I've had struggles with incontinence my whole life . T was the little girl in grade school that would pee her pants ever so often in class Those days were the worst! I only had one stretch when I was in Junior high that the daytime problems where far and few between. Then going into High School I hit a growing spirt and the daytime problems started all over again. At first it was a few dribbles here and there and it got worse and worse to the point where I had to wear belted undergarments in the daytime. As time progressed I was allowed to use the the gym teachers locker room to dress for gym and a few other situations. By the time I was in my early 20's (thanks to my husband putting his foot down) I was in full blown diapers 24/7 and have been ever since.

I am Very blessed growing up to have loving and understanding Parents who for the most part never scolded me or tried to humiliate me do to my condition. I also have an over the top loving supportive husband who has never done anything to ever discourage me because of my issues. He has always treated me with the utmost respect and dignity.

So even with incontinence life is good .........................Sandy

Hi Sandy,
Yes,can understand the early years too,I had bedwetting issues,and in fact my urologist told me no doubt I inherited from my father.You know he was right,as he bedwetted and I have a cousin that is in his 60s that still does.The urologist also told me that I was plagued with the issues I have had since I was born.
I do admire your proactive attitude,that is what my wife has been instilling in me too,to keep positive and look for the bright side.If we are to have this our lifetime,guess she is right,and so are you.
Lynnan