OAB with urge incontinence

jasonm03

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  1. Incontinent
Just got diagnosed with OAB and urge incontinence with weakened bladder muscles. I knew I wasn’t emptying my bladder all the way and started to bed wet then have daytime accidents with out feeling like I needed to go. Doc said I have OAB with urge incontinence. He can’t give me anything because of medication I’m on for ptsd and back pain from multiple surgeries. Basically I have to live with this condition. Looking into second opinion outside of VA hospital. Just have to save up some money not covered by the VA
 
jasonm03 said:
Just got diagnosed with OAB and urge incontinence with weakened bladder muscles. I knew I wasn’t emptying my bladder all the way and started to bed wet then have daytime accidents with out feeling like I needed to go. Doc said I have OAB with urge incontinence. He can’t give me anything because of medication I’m on for ptsd and back pain from multiple surgeries. Basically I have to live with this condition. Looking into second opinion outside of VA hospital. Just have to save up some money not covered by the VA

Been there, done that. Except I also had a neurogenic blockage too. The truth is that medications just do not work very well for urge incontinence. Some of them will reduce the urges, but none will eliminate your symptomes. Worse still, those medications often come with side effects that can be worse than any improvements.

Even IF you could go the medications route you will still need diapers anyways. In my opinion you're better off focusing on getting really good diapers that can handle floods easily (I recommend Betterdry for that, and if you're on the west coast the VA will cover them).

IF you're also more interested in eliminating the pain of those urges then you may want to look into reverse potty training. You'll still be diaper dependent and have incontinence, but there will be very little urine in your bladder so the spasms will be very minor or non existant. You'll be better off with the near constant dripping too as your diaper will be able to absorb and wick the pee better. At least that's where I'm at now, which I have found to be a much welcomed improvement over those painful urges and constant flooding leaks.
 
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I also have the same urge/OAB problems. The spasms are distracting sometimes, and for some reason much worse in the later afternoon when I relax a bit from work. When I am work, I think I am just too busy to pay attention or something, but I know they still happen. I know I cannot go without something protecting my pants.

I sure agree with Slomo. The Meds are 50/50 at best and for me only reduced some of the spasms. In the end I get to have headaches and dry mouth for a percentage less spasm when I try to hold it back, still wearing a diaper because you still wet - Or I can wear a diaper and relax without the side effects. The drip is way better than a surge for almost every diaper I have tried. BetterDry work well for me at night, but during the day it is MegaMax or ABU usually with an abena booster. Try as many as you can and find the one that works best for you.

I either use a catheter to just drain into the diaper, or try to stay relaxed and let nature takes its course these days. Diapers are just a part of life now. I had a late afternoon meeting with the boss and had to sit in a rather well used diaper that I put on early this morning. Usually I get time to change mid-day, but not today. It was a bit uncomfortable, but no one knew outside of me. No one is paying attention and if they do, that is their problem to get past.

I wish you best in your process of dealing with this. Always remember you are not alone and things can get much worse than a diaper under your pants!
 
I have this condition - not much incontinence during the day but very major urgency and frequency. Mine is worse in the morning - probably because of coffee - but maybe for other reasons. I’ve been on Mybetriq for 6 months or so and I find that it makes a pretty big difference. I haven’t noticed any side effects like I did with oxybutynin. I did get a UTI shortly after starting on the Mybetriq, but I don’t know if that was the direct cause... The effectiveness is better some days than others with the Mybetriq. But if I quit taking it, everything is worse, including accidents. So that keeps me re upping the prescription and my insurance luckily pays for it.

Night time incontinence is unchanged by any drugs in my experience.

The doc told me that I could add in a small dose of the oxy and it would probably help in combination - and at a small dose doubtfully would have any side effects.
I haven’t tried that yet however.
The urologists are also suggesting Botox or Interstim as next steps if drugs don’t work. Both seem pretty scary to me.
 
cm90210 said:
I have this condition - not much incontinence during the day but very major urgency and frequency. Mine is worse in the morning - probably because of coffee - but maybe for other reasons. I’ve been on Mybetriq for 6 months or so and I find that it makes a pretty big difference. I haven’t noticed any side effects like I did with oxybutynin. I did get a UTI shortly after starting on the Mybetriq, but I don’t know if that was the direct cause... The effectiveness is better some days than others with the Mybetriq. But if I quit taking it, everything is worse, including accidents. So that keeps me re upping the prescription and my insurance luckily pays for it.

Night time incontinence is unchanged by any drugs in my experience.

The doc told me that I could add in a small dose of the oxy and it would probably help in combination - and at a small dose doubtfully would have any side effects.
I haven’t tried that yet however.
The urologists are also suggesting Botox or Interstim as next steps if drugs don’t work. Both seem pretty scary to me.

I can confirm they are. Botox is temporary only, and lasts about 2 months. It takes an oitpatient surgical procedure to inject it, and it can only be done once every 3 months. I had it injected into my bladder wall once, and into my sphincter muscle another. Both times it ended up clamping my sphincter down so I couldn't pee at all. Had to be catheterized the entire time.

Interstim was worse. Don't let them fool you on the success numbers either. "Half will see an 80% improvement". Well half of 80 is only a 40% success rate. Meaning it fails 60% of the time.

The test implant is a major surgery, and "dialing it in" can take more than two weeks too. Mine started off like an electric version of chineese water torture. After three weeks I was in so much pain from it that I gave up and pulled the batteries, only to find out it had literally fried my sacral nerve. That left me worse off than when I started. AND it took a second surgery to remove it!
 
It sounds like the treatment is worse than the condition. I think I’ll just live with it
 
I have been on all of them. The latest wonder drug (expensive as hell) mybetric caused serious cramps and diarrhea.

So I chosed diapers, to my doctors dispair.



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I apologize if my post will be perceived as offensive, but I just don't agree with some of the statements made in this thread...

1. Even though I agree that medication, Botox and interstim can have no effect, or the effect might wear off and that there might be side effects, there are plenty of incontinent people who have a better life thanks to these treatments. However it's important to consult the doctors and to stop if the treatment shows no improvement or is - even worse - contraproductive.

2. I'm not a doctor and also don't know the medical situation of the incontinent people who post here. Therefore I would never recommend anyone to quit on the hope to solve incontinence or even to do reverse potty training. Being incontinent is a symptom and an indication that something is wrong with the body, thus medical investigations which exclude certain diseases (e.g. diabetes, polyneuropthy, bladder cancer,...) are very important.

3.
Interstim was worse. Don't let them fool you on the success numbers either. "Half will see an 80% improvement". Well half of 80 is only a 40% success rate. Meaning it fails 60% of the time.

This is just plain wrong. "Half will see an 80% improvement" does not mean that

- exactly half of the treated patients will have 80% improvement (I know of people who have completely regained continence thanks to interstim)
- the remaining group of treated patients see 0% improvement. I have experience with the "percutane tibial nerve stimulation treatment", and even though it does not improve my urinary incontinence it reduces my bowel incontinence which is very satisfactory. So the percentage of improvement is not 80% but still significant enough to have a better life.

And even if the failure rate were 60%...if I had a 40% chance to improve my incontinence by 80%, I'd try to take it (unfortunately I know that interstim won't work for my bladder incontinence). Finally it's very difficult to draw a conclusion on the success probability of an individual treatment based on the statistics made with OAB affected patients. OAB is a symptom with a large number of often unknown reasons behind it, so that the significance of the statistical results is quite limited.
 
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Going to CT this weekend for Christmas my father in law made an appointment for me with his dr (urologist). Guess being important person were they live urologist couldn’t say no. Will update after appointment on Saturday. FYI I told him.
 
mkinko said:
So the percentage of improvement is not 80% but still significant enough to have a better life... And even if the failure rate were 60%...if I had a 40% chance to improve my incontinence by 80%,

I absolutely agree with you here. Without medication I would't had make it to became mostly continent at last for the daytime again. How ever - I think it's pretty individual what is rated as success. For me it was a really good success over the first year, to see that medication help me reduce the quantity of urge attacks in a way that I had after the first year 4 or five accidents per day in stead of 10 or 15 at the beginning. If I would had been a pessimist I had most likely say'd - well it matters little if I wet myself 5 or 10 time a day. But for me it was some how a challenge - I thought - OK if you can reduce it by that factor there should a possibility to reach more... In fact I reached more and more over was able to put down the Tolterodin. My experiance with the medication is that it will never help you to avoid every urge attack- but the higher the frequency of the urge symptom the better it works. I think maybe I had also a bit luck because it seems that parts of the bladder wall had regenerated meanwhile, but I think also consequent bladder training and the understanding the urge triggers helped a lot.
 
Everyone's mileage varies and I think we are all saying the same things there. I did not read any of the above as being this is the end all to the story. I think just educating on how others have responded and deal with things is more important than the numbers of some statistician.

Each of us deals with the issues different, reacts to medications and other items like interstim.

I took the meds and it did reduce my urges. It did not clear them up 100%. The side effects were non-trivial. I chose to give up on them and wear diapers and change a bit more often to reduce the effects, cost, and overall headaches. I could have stuck with them, and I might not change my diaper as often. I absolutely get some are ok with that and I wish you the best - I also wish those that go the route I did all the best.

We all have to chose and just knowing what others have worked with and gotten success with (in their own definition) is key. Definitely see your doctor and rule out anything like diabetes or anything else.

Telling those we love/trust is not easy. I am glad your Father in Law is trying to help. My mother found out but because she saw me hurting and asked. I was not as up front.

Please let us know how you come out after it though Jasonm03!
 
@Jasonm03
Great that you have such a good family support; keep hanging on, in many cases OAB can be cured or at least reduced, One important thing is that the doctors find the root cause fir your symotoms or at least that they can exclude certain diseases.
 
mkinko said:
I apologize if my post will be perceived as offensive, but I just don't agree with some of the statements made in this thread...

1. Even though I agree that medication, Botox and interstim can have no effect, or the effect might wear off and that there might be side effects, there are plenty of incontinent people who have a better life thanks to these treatments. However it's important to consult the doctors and to stop if the treatment shows no improvement or is - even worse - contraproductive.

2. I'm not a doctor and also don't know the medical situation of the incontinent people who post here. Therefore I would never recommend anyone to quit on the hope to solve incontinence or even to do reverse potty training. Being incontinent is a symptom and an indication that something is wrong with the body, thus medical investigations which exclude certain diseases (e.g. diabetes, polyneuropthy, bladder cancer,...) are very important.

3.


This is just plain wrong. "Half will see an 80% improvement" does not mean that

- exactly half of the treated patients will have 80% improvement (I know of people who have completely regained continence thanks to interstim)
- the remaining group of treated patients see 0% improvement. I have experience with the "percutane tibial nerve stimulation treatment", and even though it does not improve my urinary incontinence it reduces my bowel incontinence which is very satisfactory. So the percentage of improvement is not 80% but still significant enough to have a better life.

And even if the failure rate were 60%...if I had a 40% chance to improve my incontinence by 80%, I'd try to take it (unfortunately I know that interstim won't work for my bladder incontinence). Finally it's very difficult to draw a conclusion on the success probability of an individual treatment based on the statistics made with OAB affected patients. OAB is a symptom with a large number of often unknown reasons behind it, so that the significance of the statistical results is quite limited.

Uh, actually the math does work. You left out of that half, 20% of that half (or 10% overall) will also see no improvement (or negative effects) Add in the other 50% who who experience a negative result, and you have a 60% failure rate.

Though you are absolutely right. 40% IS significant. Add in what some people are willing to go through for even the slightest chance of not needing diapers, and it's no wonder people go for it. Even when it means rolling the dice on a bad bet like interstim. Which, yes, does have a 40% success rate that will vary from very minor to quite significant.
 
I will also endorse the Northshore Megamax. I deal with my OAB with regularly timed restroom breaks and diapers. Yesterday I was not feeling well and was working from home. I decided to put my Megamax to the test and just wet until it either leaked or became uncomfortable to wear. Uncomfortable won out and I had to remove it.
 
The urologists that I’ve seen over the years have several drugs that had no effect on my urinary urge incontinence. Nevertheless, it’s important to remember that the people that the drugs help rarely post on forums like this one. That’s why almost all the posters here are people that the treatments did not help.
 
Leio said:
I'm scared of the idea of Botox as well... injecting something into or near the bladder isn't a pleasant thought by any measures.

Even more than the unpleasantness of the procedure itself...

I think botox might not the best idea. I now to people who tryed that and where pretty disapointed about the results. The problem in both cases was, that the botox lame the sphincter in a way that the they had to practice ISC - what is noted for getting UTI’s... More over it helped just for a couple of month and then the old problems start over again.
 
I have OAB/Urge and I find it really acts up when I go from warm to cold. Like at work, I go from 72F on the sales floor to a 20 below freezer. Within seconds I have a urge to pee that is so strong that I have to leave my site and run to the bathroom. This happens up to 20 times per day. I have been putting off getting diapers for a while, but now I've gotten old enough to not care what others think. So I just ordered a case of better dry's on a recommendation from my friend. I've worn diapers for years off an on, but recently the urge and spasms have become hindering to my work and possibly my income so I just did it.
 
Uh, actually the math does work. You left out of that half, 20% of that half (or 10% overall) will also see no improvement (or negative effects) Add in the other 50% who who experience a negative result, and you have a 60% failure rate.

- You assume that anything below "80% improvement" (whatever this means) is a failure, which of course is a question of definition (that's why I brought up the example of my tibial nerve stimulation which is "only" partially successful but still improves my life quality).
- I don't know anything about your math background, but multiplying the fraction of treated patients with the fraction of maximal improvement has no statistical meaning. Let's say that 50% of treated patients see 80% or more improvement and that an improvement of 80% is the minimum criterion for an individual treatment to be rated as succesfull, than the failure probability of the treatment would be also 50% and not 60%=100%*(1-0.8*0.5).

If you want to discuss more math, you can PM me; that's more meaningfull than derailing Jason's thread into a math discussion.

Though you are absolutely right. 40% IS significant. Add in what some people are willing to go through for even the slightest chance of not needing diapers, and it's no wonder people go for it. Even when it means rolling the dice on a bad bet like interstim. Which, yes, does have a 40% success rate that will vary from very minor to quite significant.
I would be lying if I claimed that the idea of InterStim didn't scare me... some kind of implant being inserted, wires threaded so that it could stimulate the sacral nerves in my spine, the idea of tuning the electrical impulses as if my nerves were like the strings on my violin. Of course, I'm scared of the idea of Botox as well... injecting something into or near the bladder isn't a pleasant thought by any measures.

I'm not an explicit fan of sacral neuromodulation (SNS, InterStim) but I don't have such a bad image either. Some people have health risks because their bladder volume is too small or too large, and SNS is a good approach to address this. Also, a good neurourologist knows about the problems related to SNS and applies procedures to minimize the risks of missing success or pain. In my case SNS was ruled out as possible treatment based on results from urodynamic tests. On the other side I understand that people are hesitant to have such an electronic device implanted in their body if they can live without it (and are ready to accept incontinence).
The urologists that I’ve seen over the years have several drugs that had no effect on my urinary urge incontinence. Nevertheless, it’s important to remember that the people that the drugs help rarely post on forums like this one. That’s why almost all the posters here are people that the treatments did not help.
That is my impression as well. That is why I was trying to give a more positive image of the various treatment options.
 
mkinko said:
- You assume that anything below "80% improvement" (whatever this means) is a failure, which of course is a question of definition (that's why I brought up the example of my tibial nerve stimulation which is "only" partially successful but still improves my life quality).
- I don't know anything about your math background, but multiplying the fraction of treated patients with the fraction of maximal improvement has no statistical meaning. Let's say that 50% of treated patients see 80% or more improvement and that an improvement of 80% is the minimum criterion for an individual treatment to be rated as succesfull, than the failure probability of the treatment would be also 50% and not 60%=100%*(1-0.8*0.5).

If you want to discuss more math, you can PM me; that's more meaningfull than derailing Jason's thread into a math discussion.




I'm not an explicit fan of sacral neuromodulation (SNS, InterStim) but I don't have such a bad image either. Some people have health risks because their bladder volume is too small or too large, and SNS is a good approach to address this. Also, a good neurourologist knows about the problems related to SNS and applies procedures to minimize the risks of missing success or pain. In my case SNS was ruled out as possible treatment based on results from urodynamic tests. On the other side I understand that people are hesitant to have such an electronic device implanted in their body if they can live without it (and are ready to accept incontinence).

That is my impression as well. That is why I was trying to give a more positive image of the various treatment options.

Obviously. If it doesn't give any improvements at all, then it is a failure. And it isn't a 100% success when it's only 80% either. And I'm an electrical design engineer. I do math like this for a living so I can see the spin on the numbers. And you're right, I'm not going to argue math with you because I know I don't need to.

Honestly though, it's almost a moot point anyways. Be it either 40% or 50%, the rate of failure is still not in anyones favor.
 
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