www.incontinentsupport.org

Hi guys,


Wondering for those of you with overactive bladder, how many of you had significant or total reduction of symptoms to the extent where you no longer needed diapers, and what treatment achieved those results? Since my first appointment I've tried Kegels (not seeing much, if any, improvement), timed voiding (hard to stick to and not seeing much progress), a couple meds. Oxybutinyn was intolerable for me. I took it for a week. Saw a slight improvement in symptoms but at the cost of bad headaches and a mouth so dry I could hardly swallow. Same with Toviaz. I'm on Mybretriq now and I'm close to dropping it. None of these pills have reduced my bedwetting by more than a night or two. What's the point of that when I wet 5-7 nights a week? Doesn't get me out of diapers and the side effects are terrible. Mybretriq has had remarkably lower side effects but still pretty lousy and not any more effective.

When I hesitantly decided that I needed diapers to manage this problem, I really thought it would be temporary. The urologist initially made it sound like this would be very treatable. None of the meds are working and I'm getting discouraged. I could deal with wearing a diaper to bed believing it was a short term thing. My day time symptoms have not progressed and I still only need protection when I know I'm going to be away from a toilet. I get by with pull up style underwear and generally only wear on my commute, long car rides, and other outings where I know or think I won't be near a bathroom. What I'm really worried about though is that my daytime problem will progress if I can't find a med that works. It's not showing signs of worsening but my bedwetting randomly went totally off the rails. I'm afraid my day wetting could do that too.

This whole thing is such a rollercoaster. I feel like I've come to terms with it some days and that wearing a diaper to bed is no big deal, and other days I wake up in a wet diaper and I'm sick to my stomach over it. I remind myself how much better a wet diaper is than a soaked bed but I still feel like crap sometimes. Buying pullups to wear is making me feel awful too.

Going to a urologist the first time I really believed a pill would put a stop to this. It's getting very discouraging.

I have a follow up urology appointment next Monday and am wondering what else I can ask him for. There's still a few OAB meds I haven't tried. We've already ruled out my prostate and serious disease. Urodynamics tests were inconclusive last time, maybe I should repeat them? What else should I be thinking about?

I don't want to make it sound like it is hopeless because it isn't. Many times it takes a lot of trial and error to find what works for you. A good example is anti-depressants. For someone dealing with this, the road to finding the right medication/dose is a long one, but very much worth travelling. This (incontinence) may be the same. I don't know what issues or fears you have regarding wearing protection especially during the day, or being found out, but, if it turns out that you have to deal with this long-term, I can assure you, things will get easier. It's to the point with me that the incontinence doesn't stop me from doing very much, because the diaper allows me to do what ever I want- trips in the car or what ever. I don't think I'd be able to work in certain fields- construction, roofing or paving just to think of a few, but, I wasn't there to begin with. Hang in. If things don't get resolved, they will, at least get better.

Welcome.

For me, incontinence is a marathon, not a sprint. Since my sphincterotomy in 1999, I have no hope that I will ever regain control, which, in a peculiar way, makes my life easier. I have good days, and not so good days, but I understand the problem, and I know what I need to do. Good luck. Perhaps you will find a medication that will work for you, and incontinence will become a distant memory. If not, stick around and contribute your wisdom and support.

I think my hangup and fear is with ending up in diapers 24/7. Sleeping in them in the privacy of my own home is one thing. Wearing them all the time is another. I think I need to chill out and slow down a bit. There's been no indication that things are even heading this way but I've been "in my head" a lot lately and worrying about this. I just can't picture managing it easily. We have one large restroom on my floor at work with 6 stalls and it's rare that you can ever get in there alone. I can't imaging changing diapers in there without the whole office coming to know about it.

I guess I'm just really discouraged with meds not working so far and assuming the worst: that this will just keep progressing and I'll become totally incontinent with no viable treatment options. I know I should just take one step at a time but I"m not wired that way.

I understand your fears all too well. I've been fighting OAB for over 2 years now. I've felt all the fears, and tried all of the meds you listed, and stopped them all because of the side-effects, Toviaz being the worst (2 weeks lost in a fog I can barely remember). I'm currently taking Myrbetriq with mixed results.

As far as wearing protection at work; I've done it. I hate it. It is nerve racking. But nobody notices. And it's better than wetting yourself in front of them.

Changing isn't too hard if you have a flexible schedule. I go out for a late lunch and change there. Yes, it's embarrassing if someone comes in while you're changing, but the likelihood of bumping into anyone you know is virtually non-existent.

I have had urgency incontinence for several years now and wear a diaper 24 hours a day. To me it is just my underwear and I do not let it bother me. It will get easier for you as time passes. By wearing a diaper I go and do any thing I want, I do not let it slow me down. Advice is easy to give, sometime hard to accept, but try to not let wearing a diaper get you down.

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RetiredRN

For me, no medication had even come close to alleviating my my incontinence (or associated pain/straining by even a third. And I've been on ALL of them.....

Like Patrick said, the best you can do is to focus on improving you overall quality of life as much as possible. Even if that means seeing a therapist to help you come to terms with your unfortunate diapered reality.

Quite honestly, when one starts out in diapers 24/7, the reality is that one is extremely self concsious about having a diaper on and anyone noticing it, etc. But really, how often do you stare at someone's butt or crotch? If you wear your pants a size up, nobody will know the difference, trust me. Ive been wearing 24/7 for a little over 2 years, and wearing some of the thickest disposables on the market, and have yet to be asked point blank "Hey, are you wearing a diaper?" Granted, my situation is somewhat different than yours as i don't have OAB, i have underactive neurogenic bladder, which means i have overflow incon.. i have to cath 3 times a day and still end up wet sometimes. As far as changing in the stalls at work, I was working 3rd shift at Walmart, and had to use the public stalls to change. If you think changing in a 6 stall restroom at a workplace is harrowing, try changing in a restroom totally open to the pubic. However, again, nothing was ever said to me. I think someone on this forum said that people are more absorbed in their own little world than anything else to notice whats going on in the next stall. One trick that i have used working in a school changing in the faculty restroom is running water while im undoing the tabs. For you, maybe you could coordinate 4 flushes each with a tape on tab, if you ever get to the point of tape on briefs.. anyway I gotta get ready for work.. subbing today with the preschoolers.. gotta love little ones

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

Mike, for me the tipping point was when I finally accepted that I had to wear diapers and that diapers, for me, were the best option available. Initially, that was very hard to accept. Once past that point it was relatively downhill as the emotional stress was significantly reduced. Of course, I deal with all of the daily frustrations that go along with being double incontinent, but the fact of just being in diapers was increasingly easy to live with. And it became easier over time.

As RetiredRN indicated, diaper = underwear. I don't give much thought to my underwear. Admittedly, initially it required more thought as I had to work out which diaper worked best for me and how long I could go between changes. Once past that point the daily process of wearing diapers became routine.

--John

Hi Mike
one of the things that helped me to accept that I needed to wear diapers was an accident that happened while standing in our living room my bladder just released with out warning and I ended up standing in a puddle. fortunatly it happened while at home and not in the server room at a clients.

OAB's are unpredictable even with timed voids, find a taped diaper that works for you and accept you need to be protected 24/7 as every one else has said it does get easier over time. you will get to the point when diapers will be an non issue to wear.

There is enough in life we need to worry about, Get some diapers and stop worrying about keeping you pants dry and try to accept that Diapers are now a part of your every day life.