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follie cath for MS women
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follie cath for MS women

The time has come to get the bladder under control. What are the experiences of others? Surgery ?Les is the 45yr. old daughter. Thanks, Judy(Les"s Mom)
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147426_tn?1317269232
Hi, It's wonderful of you to be searching for info this way.  Does Les have access to a computer?  If she's unable are you aware of the programs that allow for computer control by speech, including navigating the net or forums like this and for posting with  dictation by microphone?  My XH was toatlly blind and we had a whole house full of adaptive equipment including screen readers.

Anyway - about the cath.  I am assuming she has urinary retention and can't empty her bladder or is it incontinence - or both.  You actually don't have to answer this if you don't wish to.

When possible the urogynecologists prefer to have a woman or her caretaker do an "in and out" catheterization on a set schedule.  They will sometimes combine this with meds to control the bladder from emptying all the time.  This method has the least problem with recurring urine infections.

If the specialists feel that the bladder needs constant drainage, I don't know all the options.  I do know of two of them.

The first is an indwelling Foley catheter which is placed in the urethra.  I was taught that this option always leads to at least colonization of the bladder permanently with bacteria and the trick is to catch and control infections before they get out of control.  If an MS patient is bedridden or pretty immobile, infection is often one of the greatest risks to their health and life.

I also know they can place a urostomy (like a colostomy, only for urine).  Because the area where the catheter is placed is easier to keep clean, the risk of infection, I believe, is lower, but do NOT take my word alone on this.  This is definitely not my field of expertise.

I have little personal experience - other than as a physician caring for children - and had few with long-term indwelling catheters.  The various times (maybe 10) that I have had a foley for more than three days - I have ended up ill with an infection about 50% of the time.

What are the doctors advising - or what options are you considering.  Trying to picture myself in that position, and I have had the conversation with my urogynecologist, I think I would prefer a urostomy for the ease of replacement and cleansing, but I have not looked into the risks and benefits.

I hope this helps, but if you want to expand your question we'll continue to try to help.  Also the forum is often slow on the weekend and people will be by later.  Maybe someone will have had some experience with the problem.

Quix, MD
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195469_tn?1388326488
When I was fist diagnosed with MS 12 years ago, I had trouble with repeated bladder infections.  I went to a urologist and was found to have "Neurogenic Bladder."  I self-cathed for about a year.

I preferred this method, because of my ability to sterilize the area more effectively.  I also kept a schedule, so I would know that my bladder was being kept as empty as possible, so I wouldn't have accidents or urine retention; which ultimately would set me up for another infection.

I also took one of the drugs to help with bladder control, which worked out well for me.  Now 12 years later, I am again having symptoms of urine retention with leakage, so I not only use a bladder pad, but will probably chose to go back on medication and self-cath.  The medication worked great for me, but caused a dry mouth and frequent constipation, to be perfectly honest.  It kinda "dries you out."  The medication helped in preventing accidents, when I was not able to self-cath. (I had to use a pediatric catheter, due to the very small size of my urethal opening.)  Since I had problems with spasms in my urethra, I really felt this may have been a reason I had to use a pediatric cath, also.  The smaller size made the urine flow more slowly, but did the job without pain.  I always used a sterile lubricant to insert the catheter, since insertion was difficult for me anyway.  It takes alot of work to keep things sterile, but it was well worth the extra effort, so I didn't have to deal with continual infections.

If I can answer any questions about this, please ask away.

We sure hope that your daughter will join the forum, but always enjoy hearing from you.  What a great, caring mom you are...

Best wishes to you and your daughter and Happy Holidays!

Heather
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Yes she has done the self cath and RX meds. It is getting harder for her to cath so I do most of it for her. The docs say she would do much better with a foly cath. She had to move home a year and 1/2 ago. Lost so much of her private life. Just wanting to know of other MS women who have the perment one done. We are blessed that her daddy and I have a place for her at home. Getting her some help and me too. Thanks so vey much, Judy
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195469_tn?1388326488
I totally understand that it is hard for your daughter to self-cath.  The indwelling catheter, I HAVE had some experience with, when I dated a man with MS, that was confined to a wheelchair.  The most important thing I tried to stress to him, was keeping everything clean and sterilized.  Being a man, sorry fellas, it didn't seem that he figured that sterilizing was that important.  He had frequent bladder infections, because he didn't do things so simple, like washing his hands and cleaning or disposing of his tubing and cath bag.  He said he didn't want to waste moeny buying new ones, so he kept using the old equipment.

He was as tight as bark on a tree, but I finally told him, your health is too important to not get the disposable equipment and keep your bladder healthy.  Remidning him, that a bladder infection was the very thing that kept him in one flair-up after another.  He doesn't have much feeling in his genital area, so he rarely knew he was even afflicted with a bladder infection.  When I was taking care of him 24/7 he had NO infections.  All due to proper preparation and clean hands and equipment.  He started to notice that he was feeling better and the urine collection bags (Foley bags) didn't have an odor, because they were being changed daily and new ones put on.  He obviously wasn't gettng the frequent bladder infections anymore, so his MS improved.

It's all about cleanliness...it really is.  Will that totally dismiss any infections, no!  But it sure helped.

Take care Judy and hugs to you and your daughter.  I still say, what a great mom you are.  My mother is deceased, but I know that if I needed her help, she would be there for me.  Your daughter is a lucky girl to have you.

Heather
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I am a 50+ year old female.  I have had all the tests, multiple times.  My diagnoses are neurogenic bladder, urge and stress incontinence.  I tale Enablex 15 mg every morning to lessen the trips to the porcelin throne and/oraccidents.  For those episodes of getting closed off because of irritaion from frequent uriniation and the pain in the urethra when nothing will come oout   I frequently end up with a FOley (indwelling) catheter for 5 -14 days.  Too many times to count. Normally, it hurts a bit during anfd after insertion but then it like a new part of you.  This allows the irriation to go away and dilated my urethra.   Thais represents about 30 years of experience.

However, I am entering a new phase in dealing with this solution.   Now the urologist has me using a Foley.  I have togoback periodically for it to be changed to next larger size.   We hope to be able to buy more time until the next episode because the possibility that I will have this catheter long term is looming.  

I was wondering if ther are other women out there who, for whatevver diagnosis,  are living with Foley catheter for long periods and how they cope.  I love to get some ideas for living with it better.  Right now I am one unhappy camper  looking for a vwry soft and padded chair to sit down on.  If interested,  plaese feel free to contact me.  
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