www.incontinentsupport.org

I took Ditropan/Oxybyutinin for about two years. I also take Lithium. Both of these drugs made me incredibly thirsty. I could not get enough water. Since I am bladder and bowel incontinent this made my wetting worse. I still had to wear diapers 24/7. All it did was cut down on my urine production just a tad. But after a while, the ditropan lost its effectiveness. I'm still confined to diapers for my bowel incon and I wet the bed every night. I quit taking the med a few months ago. I am less thirsty and still using the same number of diapers as I was before with the ditropan. So what was the point of the drug?

I too have tried the gamut of drugs out there: oxybutinin, detrol, toviaz, vesicare, and Myrbetriq. All but the Myrbetriq gave me horrible dry mouth which led to lots of fluid consumption and more frequent leaking. The problems I had with the drugs were a loss of mental acuity and joint pain, which led me to giving them up.

I consider myself fortunate that for the most part, I have several minutes warning between the time I feel I have to pee and actually leaking and knowing I have at least an hour between peeing and needing to pee again, so I do not wear 24/7 but only when I am away from my usual routine and don't know that I'll have ready access to a restroom. I'm hoping that it doesn't go down hill from here, but we'll cross that bridge when we get to it.

On top of that, the Myrbetriq does give me some control that I otherwise wouldn't have. I'm finding it useful while on vacation, but will stop again as soon as I get home.

Sorry you had such a bad response to the meds. I've been on vesicare for nearly 5 years. I know that before I had the catheter the vesicare was definitely useful and took me down from very painful bladder spasms very frequently to one larger void a day. The top dose took me down to once or twice a week - but the dry mouth and constipation were not bareable. I've been scared to try stopping the vesicare because spasms around a catheter are super painful but I'm now thinking I might give it a go since I started taking d mannose and it has greatly reduced my general bladder discomfort. I guess there's only one way to find out if it's enough!

I've not heard of joint pains and things. That's something I suffer with in general so I wouldn't notice if the vesicare was adding some. I'd really like to reduce my meds. I think I take 12 and all but one are just for symptom relief. I take a lot of supplements too but at least their purpose is to help heal and or manage the root problem.

Besides the ditropan, I've tried imipramine, vessicare, and enablex. This was all several years ago. There are newer drugs on the market. The ones I was on affected my concentration and gave me painful constipation. I was having to compensate with laxatives. It was very unpleasant.

I know what your saying about spasms around a catheter. When I had my urodynamics, they had me hooked to the machine and as they were filling my bladder taking measurements, I had a bladder spasm and urine shot out around the catheter. It hurt really bad. It almost got on the nurse. It was extremely embarrassing .

Yikes, that happened to me at my urodynamics. I guess my bladder pressure was really high. It went around the catheter and did hit the Nurse a little. Like you I was mortified, especially when the catheter shot out even before she was done taking measurements. My urologist said, "you're overactive bladder is really bad with those spasms."

I am grateful he didn't push the pharmacy or surgical options too heavily and allowed me the dignity of continuing to manage this with containment

My urologist wanted to do interstim or Botox. I said no to both. We all know the implications of those procedures.

Botox is the next suggestion from my urologist. I'm not inclined to go for it right now, because I manage fairly well. I've read about possibly becoming catheter dependent after the procedure and that the effects are not permanent and it needs to be redone and possibly looses effectiveness over time. Are there other drawbacks?

From what I've heard, your understanding is true. Those were the risks explained to me. I couldn't justify it. I am bowel incon too so the point was moot. It was a temporary fix for my urinary issues but I would still be diaper dependent for my bowel issues so why bother.

I got to a point where I asked the same question. If a drug, botox injection, exercise/method, whatever, won't last even a year then there really is no point in going through with it. Short term workarounds like these are like trying to put a bandaid on 6 in gash. Useless.

I came to the same conclusion, Brian. What made the decision even easier was the knowledge that because intersim, Botox, and PINS are all considered "exploratory" my insurance only covers a tiny portion of the cost. And, as you said, it can't even last a year.

So if I have it straight, my cost for most bladder medication is tier 3, meaning $50 or 50%. For Mybertiq that's $341, leaving me with $170 to pay for the pills each month.

Botox is in theory cheaper over the long term. Studies show that the average drug cost per patient at 9 months is $1942, with the Botox being $1266. So despite being more expensive on the onset, if you stop taking medication the Botox is cheaper... which is assuming you can live with either side affects and assuming it dramatically improves the condition. For some it does.

For intersims the cost of the procedure is 50k-70k from what I have read with no way of knowing how much that would ultimately cost to me, and again with the possibility that I would still need diapers.

The risks, the costs, and the degrading efficacy all lead me to the simple conclusion that diapers are a hell of a lot cheaper and their side affects are ones I am comfortable enough dealing with. If you have an incredible policy that will pay for these treatments at little cost to you or if you absolutely have to explore every possible avenue no matter how slim, I get trying, but I can't afford that.