www.incontinentsupport.org

Hi everybody,

I'm 44 and have had incontinence issues for about 5 years, and have dealt with it using diapers for about 3 1/2 years. In the past I could get away with one diaper in the day and another at night, but lately I'm wetting a lot more and also feel like I'm not fully emptying my bladder. I'm a type 1 diabetic and have some nerve damage due to the disease. A few years ago I was diagnosed with neurogenic bladder and the urologist told me I would need to self-cath or use drugs to treat. I don't want to go the drug route because I already take too much medicine and I have a very real fear of catheters.

I've heard that a sphincterotomy is an option, either using surgery or chemicals. Does anyone have experience with these methods? Was it something you had to "talk" the doctor into? Were there any complications? Would you do it again if you had the chance? Did it make you leak constantly, and if so how did this change your method of dealing with incontinence?

Thanks in advance for your help! I'm pretty nervous about this whole new experience.

seattletown,

I had my sphincterotomy in August, 1999. It ended years of intense bladder pain and the reflux threat to my kidneys. Prior to the sphincterotomy I had perhaps 3-5 Botox injections; I do not remember the precise number. Although I am sure that the Botox formulations have changed since I had mine, my experience may still be useful. The injections themselves were simple and unthreatening; however, my reaction to the anesthesia made home care necessary the next day. The injections gave me an accurate idea of what the sphincterotomy would later do: I leaked continually. The problem with the injections was that they wore off after successively less time, so that my June, 1999 injection lasted less than six weeks. If you are skilled in incontinence management and understand that a sphincterotomy will make wearing protection of some sort an absolute necessity for the rest of your life, go for it.

Thanks, Patrick. I'm just hoping I can find a doctor who will work with me on it. The last doctor said I would just have to get used to using catheters or drugs and wouldn't even discuss other options. I guess I'll see.

I ought to point out that in some cases, where there has been problems emptying for a long time, the bladder muscle itself starts to get much weaker. At that stage, a sphicterotomy may not actually work. However, there are benefits in using intermittent catheters.

1. Obviously, emptying the bladder properly reduces infection problems.

2. If the residual urine in the bladder is substantial (mine was about 500ml), then emptying with a catheter gives you 500ml (or whatever you residual is) before any leaks happen. So by timing voiding with the catheter, the protection become redundant.

3. If, like me, the bladder more or less gives up, then I have dropped all protection (apart from a bed pad) and empty four times a day or so. It gets me up at night (05:00hrs today) though I can avoid that by drinking less. My voids can be larger, though, 1.3 litres this morning for example.

I am using Coloplast's Speedicath Compact Male catheter which is easy to carry around and simple to use. Overall, I reckon I am as well off, if not better, with this arrangement and no protection than having some form or treatment that puts me back to drainage bags and the like.

seattletown,

If you can manage the side effects of the medications, and if they work for you, wonderful. And if your current management works well for you, perhaps your doctor is right. The medications I used, especially Ditropan, gave me intense dry mouth, so that I drank far more than I would have otherwise, which exacerbated my incontinence, threatened my kidneys, and made life miserable. I have a genetic disease which made artificial sphincter surgery too hazardous to try; a sphincterotomy was the last and only resort.

Good luck with your decision. I hope you find a congenial doctor who will assist your management.