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Incontinence with NCS (bladder and fecal)


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We are lucky in that my husband's syncope is under control for the most part; however, he does have periodic episodes of losing control of his bladder or bowel or both. These attacks seem to come in bunches (just like the syncope used to) and really cause disruption to daily living and especially work. The doctors believe it is a type of pre-syncope event and are stumped as to any specific treatment for just these episodes. He does take his meds consistently and drinks lots of water. What he doesn't always do is get enough sleep or put limits on the number of hours he works but then the episodes don't seem to correlate directly to times when he is over extended.

I know I have asked before but I keep hoping someone new will join the board with similar problems and have a suggestion or two. I certainly hope none of you develop these symptoms. We're open to any ideas.

Thanks

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hi -

this isn't exactly a "me too" so don't get too excited, but i did have one thing to throw out there for the urinary incontinence. (personally i have issues NOT being able to go in both arenas, which can also be pretty problematic...too bad there can't be a happy medium.) i don't know if this would/could make sense with the problem being periodic, but i know that some with issues of incontinence have luck with intermittant catheterization, or even with simply going to the bathroom more often than the felt need in able...i think the idea is that if the bladder is more full the incontinence is more likely to occur; by keeping it closer to empty it decreases the chance of problems. technically speaking i think this theory would be deemed as help for overflow incontinence, but it came to mind when i read your post so i thought i'd at least throw the idea out there in case it could be of any help...

good luck! (and glad to hear that things are going decently in the syncope realm),

:-)melissa

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Thanks for the suggestion. He is seeing a urologist Thursday but the pattern of incontinence does not match any of the criteria on their standard questionaire so we aren't really hopeful. This has been a recurring problem but it has gotten much much worse in the last few weeks so we are now thinking that maybe the low dose of beta blocker he was prescribed has been a negative contributor - we're checking with the cardiologist.

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Hi there,

So sorry you and your husband are going through this. This has happened to me once. I was sick in the middle of the night, and I was having (sorry to be graphic, but there is no other way) a bowel movement and getting presyncope at the same time. I fainted while having the movement, and I lost control of my bowels right before and during my pass out.

I was told that this stems from the Vaso-Vagal response, as the Vagus nerve plays a part in both the syncope, as well as GI system. During a time of crisis, the Vagus will move everything to try and restore homeostasis. Unfortunately, there is no way to avoid this when it happens. Some things that have worked for me are to increase the fiber, and keep the tract as clear as possible. Also, if one is straining to hard to have a movement, that can easily bring on syncope, as that is basically the Valsalva Manuvoer.

As for the urinary issues, I have to get up and go sometimes 8 times a night, full bladder everytime. Dr. Low advised that this is part of the autonomic imbalance, and that the nerves are getting a mixed signal. I was told to try and practice letting the stream go, and then trying to stop it intermittently. I also avoid drinking anything 1 hour before bedtime.

Good luck with everything, I hope you get some more answers.

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don't worry too much about not "fitting" the typical questionnaire...i didn't fit the urology questionnaires locally or at vanderbilt but they've still been able to help me out...not necessarily with all the answers or a quick fix, but still help. hopefully you'll have a similar experience...

:-)melissa

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i also have bladder troubles, and when sick, sometimes bowels. it seems to be in cycles for me too. i have tried many meds to treat the bladder trouble, but with no luck. i have also done pelvic floor excersises for years. i am currently waiting to see if i am one of the few that can have and beneifit from surgery. when out and about i use pads for leaks, but i work very hard at using the restrooms when ever i see one. this seems to help me.

i hope you get some help,

blackwolf

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I hae the opposite problem in both areas. But when I have bad episodes I have diarrhea sometime having to crawl to the bathroom. yada yada.

Since you husband is a man he can use a condom catheter and leg bag while at work to avoid embarrassment for the urinary incontinence, its an alternative to wearing adult diapers.

Does he have enough warning with the bowel incontinence? You can look into a bowel traing program but Im not sure if that will work %100 because its prob the autonomic system and we all know how difficult that is to control.

Good Luck,

Janine

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The urologist agreed that the bladder & bowel problems are most likely related to his NCS. I don't think I explained it well. There is no leaking, instead it is as though his body just decides to flush whatever it has and he usually gets a drenching sweat at the same time. Otherwise he is "regular" in this department. The first thing he wants him to try is Detrol (for overactive bladder) with the hope that it would delay the response and buy him some time.

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i really help it helps, remember there are some new ones with less chances of side effects.

one warning, be very careful with those "bladder control" pills, the cramps and constapation can really set you back. i have tried 6 different with results from just severe constapation to can't stand up because of pain and anything in between and including all.

best of luck,

blackwolf

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Hi,

I too have had bladder problems for years now with NCS, I have had two surgeries which have done nothing to help. Including a pacer like device that was installed in my bladder but later taken out because it didn't work and was very uncomfortable, even though the doctor didn't believe me that I could feel it...

The only thing that seems to help "a little" is after urinating, bend your body over between your legs for a few seconds, I always seem to release "ALOT" more urine and helps with the frequency of running to the bathroom. and of course kegal excercises.

Hope this helps

Sue

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I have had both of these problems - guess I still do. I also get up many times durin the night and have to go a lot during the day. I also have found that increasing fiber and keeping my GI tract as clear as possible has done more good than anything.

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I've had the opposite problem of retention both urinary and constipation. My neurologist and I agree it's the NCS causing it. I've had to self catheterize but in my reading up of that they recommend the same thing for incontinence problems. As someone else already mentioned in this post..it would keep the bladder empty on a regular basis and thus, less likely to have any leaks or flushing. I don't know if there is anything for the fecal incontinence though.

The self catheterization may be a "good" option for your husband if the meds don't work. Personally, I prefer the self cath to the meds simply because my body reacts so horribly to any meds; this way I don't have to deal with meds and side effects etc.

Hope you get some answers that will resolve this dilema soon!

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Thanks for the suggestions. So far, 5 days and doing well with the Detrol (no noticeable side effects) but now the real test begins since we are back to work and a more uncontrolled schedule. He has committed to trying to take better "preventive" care of himself and that hopefully will go a long way to keeping his symptoms under control. It's difficult for him to accept limitations but I think this has really hammered the point home that he has to.

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I copied the following from Medscape Drug Info on Detrol LA. I found it encouraging that it is used for neurogenic causes.

Tolterodine tartrate is used in the treatment of overactive bladder for the relief of symptoms associated with voiding such as urge urinary incontinence, urgency, and frequency.

According to the International Continence Society (ICS), overactive bladder disorder is characterized by involuntary detrusor contractions that may occur spontaneously or may be provoked (by rapid filling, alterations of posture, coughing, walking, jumping). An overactive bladder of neurogenic origin usually has been referred to as a hyperflexic disorder, whereas one that is nonneurogenic is referred to as an unstable disorder. The hyperflexic overactive bladder disorder usually involves a neurologic disorder. Tolterodine tartrate is used for the management of symptoms associated with both neurogenic and nonneurogenic overactive bladder.

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It's working for both - no problems in 2 weeks.

Two weeks down and the Detrol LA (tolterodine tartrate) is working to control both the bladder and bowel problems. The urologist was fairly certain it would help the bladder incontinence and hopeful that it would help the bowel incontinence and it seems he was right. When I look up the medication, it is a "genitourinary antispasmodic" or smooth muscle relaxant. I did a search on google for hyperreflexic bladder and bowel (a.k.a. neurogenic bladder and bowel) and it appears there might be some literature tying the two of them together but it is in the Journal of Urology and the articles must be purchased.

So far we are thrilled. I'll update again in a few weeks.

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