www.incontinentsupport.org

Well, it's been a while, so I thought I'd drop an update.

I wish the news was better, lol, but "oh well."

What began as a bedwetting problem has become an all the time problem. I've been back to the doc a bunch of times now. He keeps acting like a solution is right around the corner, but I'm getting more and more skeptical. (one of the nurses there, btw, was more of a realist. Said I should probably work on acceptance...)

We've tried a few drugs now, none of which have done anything more than slightly reduce symptoms, and all of which have had horrific side effects. Dry-mouth is a blessing at this point. I've never been constipated in my life, until taking a couple of these meds. I have tremendous sympathy now for those who deal with that frequently, lol.

Doc has started talking about surgical options, but I'm increasingly resistant to consider them. My biggest mental hurdle is that nobody (multiple docs) seems to be able to state with confidence what they think my root issues is. I'm incredibly reluctant to let someone wield a knife against my nether regions without that...

I had something of a mental snap back in the December (about the time of my last post). I decided this won't affect my life, and so far, I've refused to let it. Things are still going well on that front. I wear diapers around the clock now, and not once has it been "a problem." Nobody's noticed that I hadn't already told, and changing in public has become easier and easier.

I have to admit; I don't have a lot of hope left for a "fix," but I'm caring less and less about fixing it. I fear I may face a reality check down the road on that, but for now, I'm doing fine, and thank you guys for all of your advice!

Good for you! I see good signs in your post that, while you are not happy with the leakage (none of us are!) that you are coming to terms with it while not finding any definitive reason....or cure.

Acceptance of your lot in life...in our case leakage and usually diapers! is a most important part of getting on with life!

Sounds like you are doing OK.... and keep your chin up! You will be fine!

JoeK

Allow me to ad my kudos to Joe's.

I'm at pretty much the same stage as you when it comes to managing my incontinence. I wear a diaper, lead an otherwise normal life, and no longer worry about it. Incontinence can be as big, or as small, an issue as you let it be.

Thanks for the update CallMeTim, and another confirmation that the meds are nasty and full of unwanted side effects! Puffy

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Puffy
BC, Canada
Fighting the "Bladder Battle" since 1995

Diapers are only as big a deal as you let them be. Once you find out that nobody else really cares or wants to know then it won't matter to you. Most surgeries will not fix the problem but may offer some improvement. If it does fix it great. If not, then you might have more problems down the road.

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When life hands you a lemon, make lemonade.

Thanks for the kudos, all. (and this time I mean it, lol)

Yeah, that's pretty much what I'm learning. The Doc has me doing pelvic floor exercises and timed voiding, but has mentioned more invasive options down the road (Botox and Interstim, specifically). I've read up on them, and frankly, don't particularly care for the risks vs. success rate equation on either.

I'm not going to worry myself over it until its decision time, but if I had to make the call right now, I wouldn't be doing either of those options...

Hi Tim,

My name is Rob.. aka sociologygeek.. and im pretty well known on this board... if you search my name.. youll find my posts dealing with my issues. My case is somewhat similar to yours.. but also different. The main difference is.. when my issues surfaced, I was dry as a bone at night but had dribbles that snowballed into floods over the course of the year. It started in 2008... but before then i often had dribbles on my undies and episodes of sudden release where i started going before i had a chance to get my pants open.. and it went down my leg Then in 2008 I finally decided to start wearing some sort of padding.. at this point it was just dribbles.. but then it got worse... i ended up wearing the diaper style products..partly for capacity, partly for the fact that no other product, regardless of lesser need for protection..just does NOT work with the male anatomy. You discovered this rather quickly with the pullups.. yeah, i first tried the guards..but found them uncomfortable and inconvienent..strap on undergarments..same thing.. Pullups were sligtly better.. only if i ignored the fact that the waistline goes well above my jeans and they tend to sag... not to mention the gaps.. i found very few pullups that were adequate enough to contain enough padding... because of the male anatomy..its possible to leak from multiple points.. and all may not be necessarily covered by a pullup.. if ya know what i mean.. long story short.. i ended up wearing tape on diapers 24/7 because like you i never knew an incident would strike. The oddest thing though was while i was having Niagra falls sometimes durnig the day.. at night not a peep..

But while i dont neccessarily have the same situation as you, i definetly relate to the need for answers. At first, my doc assumed it was OAB..and put me on detrol..nope.. not helping.. VeSICARE..even WORSE..caused a dangerous dizzy incident while driving. after that.. i wasnt at all enthused about meds.. talk of Interstim came up...at first.. i was willing to try it.. but later, when i found out about the side effects.. and how most likely id STILL be wearing diapers some of the time.. im like NOPE..

So, after running the gauntlent of pills, urology visits galore.. being told i might have to live with this.. thinking its neurological.. getting that checked out.. and finding NOTHING wrong there... at last a very sharp and astute urologist at U of M.. who i will be forever indebeted to.. suspected it wasnt the detrusor.. so much as it was the spincter. he said.. i didnt have a problem holding it in.. i had a problem letting go.. which made sense.. but still didnt explain the floods.. but im getting ahead of myself here.. he thought the problem was my not relaxing the sphincter enough.. and he thought one of my meds.. Catapres was the culprit.. and sure enough.. there was a change.. but, not totally dry.. and then i underwent his suggestion of pelvic relaxation therapy.. that was my magic bullet. Not only did they fix the not empying part.. but they explained that the floods were most liklely a result of me not emptying enough.. and holding it in and in.. and finally my muscles fatigued and let looose.. it made sense.. and i went thru the training regimen.. and it worked.. im dry as a bone now.. and have been since 2010 or so.. so the moral of the story is dont give up.. investigate every angle..and if youre close enough to Michigan.. if all else fails.. give their Urology department a try.. i cant say enough about them..

Peace out!

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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

Rob, that's some very encouraging information.

I'm about half an hour from UMich... I wonder what the odds are that they'd be able to use my previous test results as opposed to having to suffer through another urodynamics or cystoscopy... /sigh

My current doc has been better than most I've dealt with, but that doesn't mean a fresh opinion is a bad idea...

yeah.. i know what you mean..cytoscopy and urodynamics are not for the faint of heart.. for what its worth tho.. when they did my cytoscopy at u of M, it went a lot more smoothly.. but it burned afterward.. at U of M... they can do not just urodynamics...but flurourodynamics, which not only gives them raw numbers on bladder function but also an xray of the bladder itself to give them a visual image of the urine flow.. it helped them get to the root of my problem....


ill pm u the name of the uro i saw.. hope that will help..

peace out!

Rob

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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

One more thing.. Tim, im curious.. are you taking any medication? Often times, medication can cause bladder issues.. especially antidepressants or heart meds.. as i mentioned, Catapres was doing a number on me... you never know.. with me...it was a simple matter of getting the meds changed..

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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