www.incontinentsupport.org

I had an appointment with a new doctor to explore another direction to go with my treatment and although he is open to it, he wants to put all the options on the table. Besides my incontinence I also deal with daily bladder pain. Sometime are much worse then others. The things he wants on the table at botox for the bladder itself, interstim, a artificial sphinctor and to flat out remove the bladder and put in a stoma to drain urine three to four times a day.
We scheduled a new urodynamic study and while we wait for that I did as I felt I should and considered all my options. Because to me, the pain is more of an issue then the incontince, this has a great effect on my logic on which direction to go. What surprises me is how much importance the medical field places on bladder control and the need to not have to wear a diaper.
Botox shots to the bladder to ease the urge I don't think will do much for pain if anything. To tell the truth, I picture that making pain a lot worse. I am sure that helps a lot of other people but to me, taking a chance to paralyze the bladder and take a chance on kidney damage seems risky. Intnerstim? I don't know about you by the idea of someone screwing with my spine is a major turn off not to mention an implant and the restrictions that come with that. Something else about interstim is they consider it successful if you have an "improvement" in symptoms meaning if I can make it to the toilet twice and have fewer accidents its successful. Well if I still need a diaper, what's the point? An artificial sphinctor? Again I don't think that will help my pain symptoms at all. Besides, its a pretty major surgery and seeing a video on YouTube on how its done.......yikes!!! To hell with that. Last option I'd to have the bladder and everything below removed. I am not a fan of that idea. Besides the bladder, the prostate would come out as well and at the age of 40 I am not willing to take that big a chance to risk my sex life. Not to mention having to self catch three to four times a day forever. At least with a diaper, I still have options down the road should I change my mind or want something different.
What amazes me is the lengths some will go to avoid a diaper. The chances they take and the distruction to their bodies they will do. All to basicly trade one problem for another. The videos the new doctor sent home with me are by the company's that sell these devices and I take it with a grain of salt. But listening to the testimonials really made me sad. All but one had incontince symptoms for about a year and were complaining about having to use a pad or the leaks or wet clothes. It's sad that something as simple as a diaper would give them a normal life. All they need to do is swallow their pride a little and think outside the box. Granted if my old doctor had put these choices in front of me within the first year, I too would have jumped on the opertunity to stay out of a diaper. But now, a few years into this life, I plainly see its not the end of the world and I can do all the same the same things I did before and with out ANY side effects. Well other then the random rash.

Sorry for the long post and the rambling but this is where most of my attention has been for the past few weeks.

Rope

Rope,

I certainly agree with you that the length to which people will go and to which doctors will advise people to go to avoid wearing a diaper is dismaying. Like you and many of the other people here, I've adapted to wearing a diaper and discovered that doing so permits me to lead a normal life. Wearing a diaper is a moderate nuisance, not a catastrophe.

However, from what you say, you have a second, much more debilitating problem: pain. I've never had bladder pain, but I suffered from serious knee pain for about a year before I had knee replacement surgery 18 months ago. Serious, unremitting pain is very difficult to deal with; and I think that you definitely need to find a way to alleviate that if possible. Relieving your pain, not finding a way to get you out of diapers, should be your doctor's top priority. I urge you to make sure the doctor understands that.

Hey Bud, of course we're here for you no matter what you decide to do. Sounds like you have a lot of options to weigh. I don't have IC either so I can't speak much about that issue but after using catheters for 7 1/2 months, diapers dont slow me down a whole lot. Being Cathed weekly does slow me down quite a bit and drastically effects what I can do as far as hard physical labor. (I'm talking job related as you know) and slows down daily living as I'm always toting a foley bag around, changing bags morning and night, and disinfecting bags when changing them.....it's a hassle.....diapers are just so much easier than other methods of managing incontinence. Good luck and let us know what's up

Rope,

Bladder pain can be disabling. For me, it was right up there with radiation poisoning and sciatica. I had several Botox shots, and they worked as advertised. The problem for me was that they wore off after successively shorter periods of time. However, they did give me a good idea of what the sphincterotomy would eventually do, so that the surgery did not bring any surprises.

We need to remind ourselves that diaper makers sell diapers; surgeons sell surgeries; pharmaceutical companies sell pills and potions, just as car companies sell cars. The subjects here are our bodies; we need to make informed decisions about what we will allow the medical community to do to us.

Botox helped my pain but that was because the spasms were causing the pain. Nappies/Diapers didn't solve things for me as my voids were too big so they leaked. For that reason I can't just do pads and no treatment - it's too uncomfortable. I wouldn't have botox again though because either the botox or the anaesthetic caused a e health relapse causing weakness to my arms which lasted ages and then never went away completely. Vesicare makes me more comfortable/slightly drier with minimal side effects but still need nappy type pads. I have a catheter now and honestly - it's a relief as due to mobility probs I was struggling with the pads.