www.incontinentsupport.org

It's been confirmed by a nurse at my urologist's office.. My neruopathy is causing my incontinence. The urodynamics showed that i had hypersensitive bladder, and the nurse doing the test wondered if it had something neurolgical going on. Well, yes indeed, it is causing the incontinence. I now have a definite cause. It feels so good. And, i've probably had this life long. The question is now, what to do about it? I am a canidate for InterStim therapy, and the nurse said i could try other medications. Or, i could just do nothing and let nature take its course. Has anyone tried Interstim with any measurable success? What now?

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

Soci,
About 5 or 6 years ago, in my second year of incontinence, I tried the interstem on a trial basis for a week. I did not help me any. I have heard it has helped a lot of people. As I said, it was a long time ago when I tried it. They may have improved it. My urologist asked last year if I wanted to try it again, and I said no thanks. .........Paul Martin

Thanks for the input paul.. I don't really like the idea of surgery.. and i dont know if medications would help any either. I suppose it may work, but from what i read on the site, the battery in the stimulator would have to be changed every 5 to 10 years, requiring more surgery! I don't know, it does seem a bit extreme. I can see why my urologist said i should consider living with this as is. I read that they did a study where 80% of the people showed an improvement (where 50% reduction in urge episodes was considered improvement) , with 45% of those studied were completly dry. That doesn't sound real promising for me, seeing as how i want to get rid of the diapers. But, it may be worth a shot.


But correct me if im wrong here..wer'e talking about either medications, which have been proven marginally successful at best, or a lifetime of surgeries which may near reduce the problem, or near eliminate it, with risks of surgical complications, and i may not be entirely dry, or i just live with it, and get used to diaper dependence...given these options, i don't know. But, really, the only thing to "treat" in my case is the fact i wet my pants. So, in reality, we're treating stigma..

don't mean to sound ab/dl here... but diapers may be the best and easiest option for urge incontinece..

If nature intended some people to not have bladder control, and to undo that would require loads and loads of surgery, etc etc.. why bother unless it is proven to be really succesful? Did you know that some medical experts actually say that incontinence is only a problem if the patient thinks it is? That should tell you something right there. This is not diabetes, where medication is required to sustain life. This is not spina bifida, where surgery is required to close a hole.. this is simply the body's inabilty to hold urine. The only real complication that diapers bring is social stigma, emotional disturbances, and diaper rash. While these may not be easily remedied, it is possible to adjust to wearing diapers. Social stigma can be remeided by education. Granted, this is my opinion, and i know some may not agree. And the ability to wear diapers with ease does depend a great deal on the support the incontinent person gets. While yes, it is the norm to have bladder control, and incontinence isn't normal, it is by no means life threatening, and does not really need radical surgical medical intervention. It comes down to what one can learn to live with, i suppose. To have surgery to be "normal"..that is continent, that will have to be repeated.. in my humble opinon is a bit extreme. It may be worth it if it saves me from having to wear diapers. But, it would only be worth it then. Either i stay totally dry, or i wear diapers. There's no in between.

But, does that mean i will not try interstim? No, it means i havent decided yet. I think i will give it a fair shot, but not now. If it provides enough benefit to risk surgery, ill do it.. but it would have to be pretty darn good
for me to do that. It may be worth doing, im not discounting it.. but i dont have the time to try it right now. It would require surgery downstate, which can't happen with my parents not here.

Ill get off my soapbox now.. if this post seems repetivive of other things i have posted, i apologize in advance.

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

Funny you bring up InterStim. My doctor just sent out this week a letter to his patients telling us about a new procedure that might help us. The doctor's office is even having a special event that we have been invited to to learn more about it. After getting this letter I go online and found out that this isn't something new. Ready the same things sociologygeek read, the big question is it really worth it.

The surgery doesn't bother me because things over the years have gotten better in that area. What does concern me is the fact that the device will set off metal detectors and could set off some store products alarms, the type that goes off when you leave.

I am thinking about going to this event/show to see what they have to say, but I don't know that it is for me. If I find out anything interesting I will post it.

Well... I can't say I'm glad for you... but I am happy that you at least got a diagnosis. Now you can make more clear choices with how to move forward.

I've never been a big fan of surgery myself... to me the benefits don't really outweigh the risks. You get used to wearing protection after a while, and there are convenience aspects to consider as well... though many of us may be unwilling to admit it. The first step comes with accepting the fact that there is nothing wrong with wearing diapers... and I'm not worried about "societal norms"... anyone who chooses to judge me because I am incontinent doesn't deserve my time anyways.

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~~PuddleGuy

What really concerns me with this surgery is assuming it works and it does make me continent, great. But i can never get an MRI. That may be a very critical imaging procedure for my neurological condition, ie neuropathy.

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

Sorry I didn't post before now. I went to the seminar at the Doctors office about this and found out some interesting things. If you have one of these you can have an MRI all it will do is mess up the unit. It will not do any harm to the person. If a person has to have an MRI they can have it, it's just that after it, the device is no good and will have to be replaced. The new model they are trying to push is a smaller unit and claim that once installed most people don't even feel it inside of them. Down side to the new model is the battery life is only about 4 to 5 years so when the battery goes out you have to go back in and have the whole thing taken out and a new one put in.

Because I work near and around large magnetic fields this device will not work for me. The doctors there said they use this as a last try effort. If it works or even helps slow things down, great, but if it doesn't work, they don't have anything else to offer.

So since then I have decided that it's diapers and catheters for me for the rest of my life.

Thanks for the input K.T. That is real good info to know. LOL, either way, you cant really get an MRI without it complicating things now can you..either way your screwed. Yeah, I tried the meds,, they didn't help. This interstim thing may be my only option. But, if like the meds it doesnt get me out of diapers totally.. i don't see the point. I mean, right now, i have pretty good control, and can stay dry for several hours without changing.. but, that's only today. Some weeks i may get VERY wet. From the sounds of it, the interstim can not elimiate every episode, and you may still leak from time to time(Which is what i do now on some days, other days i leak A LOT), hence youd still have to wear some sort of protection. So, how would that be any better? Especilly given the fact that they have to operate again every 2 to 5 years to change the battery. I checked my insurance, and it will cover the sacral nerve stimulator, but it said in there given a successful test stimulation and non neurological conditon I stress these things because the first point implies that they would not cover the test implant, only the subsequent permanent implant. So, i pay a lot of money of this thing out of pocket, what happens if it doesnt work? I'm SOL. And secondly, it has been confrimed my incontience has a neurological basis. So, this therapy may not even be appropriate for me. So why did the urologist nurse tell me it is, when according to my insurance, it would only be efficactious for non-neurolgical urge incontinence? Perhaps they mean things like diabetes or multiple sclrerosis.. anyway, I don't know. There's a LOT i have to find out about this stuff before i make any descision. My urologist was trying to talk me into just living with this and i can see why. I may never regain continence. 50% or more improved incontience is still incontinence.. and still requires diapers, and there is no differentiating in the eyes of society a person who is completly incontinent and wears diapers 24/7 and a man who has an implant and still wears pullups and wets them occasionally.. both are in diapers.. Both wear :depends." Both are incontient. and reduced incontinenec still has the same social stigma as heavy incontincce, you just get less rashes. What's the point? As PuddleGuy said to me in one of our conversations, "At some point you have to consider quality of life, your either continent or your not."

I really have a hard time at this point thinking this is a viable treatment option.

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

I understand the need to fight the good fight and in this case, trying to cure incontinence. However after reading all of the replies here, I have come to the conclusion that I really don't have an issue living the rest of my life in diapers.

Between the medication risks and side effects to surgery that may or may not work and even if it does, it still won't be perfect I agree with all here that life just isn't all that bad.

Maybe it's just me but wearing diapers just is not that big of a deal. I have the support of family, I am otherwise living a full normal life and if given the choice of disabilities, I'll take a wet diaper any day.

AMEN JRB

I'm with you Diapers are the way to go. I'd rather have wet pants then have to deal with all the side affects of the drugs the surgical procedures that may or may not work. At least with Diapers I feel good and can live a fully active life without the hindrance of the medical comunity
...............Sandy