www.incontinentsupport.org

Joe Shaughnessy has asked me to post here some ideas that I expressed in the AdultIncon Yahoo group to which we both belong. I'm going to do that and place those ideas in a broader context.

People who develop incontinence need to seek medical help because incontinence can be a symptom of a number of very serious diseases, some of which absolutely must be treated in a timely way to save your life. If you’re lucky, diagnosing and treating the underlying cause will eliminate the incontinence. However, in many other instances, the incontinence persists after the underlying cause has been eliminated or develops as a result of an injury suffered in an accident or from a surgical misadventure. And the two commonest types of incontinence - urge incontinence and stress incontinence - often have nonspecific causes that cannot be determined. For these reasons, some people become chronically incontinent and need to learn to live with the situation.

A bigger problem than incontinence itself is the stigma that it carries. Wetting or pooping one’s pants in a way that is apparent to other people is socially unacceptable; and that fact produces stigma in the eyes of almost all newly incontinent people and many medical professionals. Because of the stigma, some incontinent people become social recluses and abandon their careers. So desperate is their situation in their own eyes and in the eyes of their health-care providers that the patients will seek and the doctors will prescribe almost any measure if it offers hope of eliminating the problem or even just reducing the number of accidents. In my opinion, many patients and health care providers continue down the path of trying increasingly draconian treatments without giving due consideration to whether the side effects may be worse than the untreated incontinence would be if it were handled conservatively with diapers or some other kind of “containment device.”

My message in the Yahoo group pertained to the fact that another group member had been prescribed a certain drug to control his incontinence and didn’t like the drug’s side effects. Over the years, I have also been prescribed that drug and a number of other drugs to control my urge incontinence. I’ve tried them and found that some of them in fact reduced the number of incontinence episodes that I had. But all the drugs caused unpleasant dryness in my mouth and dryness in my nose that made me more susceptible to colds and sinus infections. And some of them caused dizziness that made it hazardous for me to walk around, let alone drive a car. Moreoover, despite these side effects, I still had enough incontinence episodes that I still had to wear a diaper wherever I went. Each person has to make his or her own decision about whether a reduction in the number of incontinence episodes makes it worth putting up with the side effects. My own view is the benefit from the drugs did not warrent putting up the side effects. If I’m going to have to wear a diaper anyway, what difference does it make whether I have two accidents a week, or two accidents a day?

Consideration of side effects is even more important when it comes to deciding whether or not to have a proposed surgical procedure that might reduce or eliminate one’s incontinence. What are the risks of the surgery? What is the probability that it will succeed in eliminating or reducing the incontinence? How will the effects of the surgery change your life in ways other than eliminating or reducing the frequency of your incontinence? I suspect that patients and doctors often don’t consider these questions as carefully as they should.

Finally, these considerations about the side effects of drugs and surgery need to be in the context of the fact that incontinence itself is actually a relatively minor disability that can be managed so effectively that you can go out into the world and live an almost completely normal life. Modern diapers, external catheters and other “containment devices” can be worn comfortably and unobtrusively, and they work so well that you can go almost anywhere and do almost anything that anyone else does while keeping your pants dry on the outside and thus maintaining what some people euphemistically refer to as “social continence.” Finding the right product that does the job for you requires some experimentation and patience. But once you’ve gotten the hang of it, you don’t really need drugs or surgery to manage your incontinence effectively.

Thank you very much! That is great, well put advice from a first hand experience stand point, adhb.

I am Joe Kelly on this board and Joe Shaughnessy on the Adult Incon board and I throw this in for the few folks who may not know that, who perhaps have not yet crossed back and forth between here, the ISC and Adult Incon, tho both Schoppy and Paul encourage such cross overs!

I hope you will now give me permission to add your work to our Primer. It is great to see it in the Forum but it will get lost, eventually. As soon as you give us permission to add it to the Primer, I will get right on it. Please let me know how you wish to see yourself credited for the piece....anything from "anonomous in North America" to "Joe Blow of Kansas City, Mo" or anything in between. That is entirely up to you, but your insite will continue to do others a lot of good in the Primer where it will remain available for all time.

Joe K

Thankyou very much for posting that great info on our forum.

I'm flattered that you want to put my comments in the Primer. Feel free to do it.

Over the years doctors have tried numerous incontinence treatments on me. The drugs Ditropan and Detrol gave me terrible drymouth, and Imipramine(sp?) gave me headaches and dizzyness. An attempt to teach me to self-cath failed when the sweet young things assigned to instruct me could not push the catheter past my clenched sphincters. Twice, external catheters came unglued at the most inappropriate, embarrassing times imaginable. When the doctors discovered that my incontinence is the result of a genetic disease, their attitude suddenly underwent a 180 degree change. Now, instead of trying everything the can think of to "cure" my incontinence, they line up to get their hands on me, and call me an interesting patient. I've been in two NIH genetic studies, and hope that the doctors have learned enough from examining me to make life easier in the future for folks who have my disease. Carl

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Carl

Hi All I started with incon about 2yrs ago drs. checked prostate as Iam older than most.I don't want to take pills due to side effects and surgery not too wild about would rather wear diapers than put up with pills or surgery.Dose anyone have comments?Thanks

Ron, there is nothing wrong with deciding to wear diapers instead of undergoing surgery for incontinence. Diapers are a virtually risk-free way of handling incontinence; surgery is always risky. Of course, if you have prostate cancer or some other serious medical condition, surgery would probably be the way to go. You always need to balance risks vs. benefits.

Here's a bit of an update on the drug situation for treating incontinence. As I stated in the post that started this topic, I have a long history of trying drugs where the drug side effects were unpleasant enough in comparison to the beneficial effects on my incontinence that I decided not to take the drug. All that changed about 9 months ago. My urologist recommended that I try the Oxytrol skin patch that you stick onto yourself and replace every 3 or 4 days. These patches have reduced the frequency of my daytime wetting accidents by about half without causing any side effects at all. When I'm wearing the patch, I generally have about 5 minutes to make it to the toilet after an urge strikes before I start leaking. Of course, since I lead an active professional and personal life, five minutes isn't always long enough; and I still have accidents and need to wear a diaper. However, I also appreciate being able to use the toilet more often.

Glad to see that someone is having some success with drugs.

After my urologist gave me drugs, I decided not to take them. As was stated earlier in this thread, incontinence is often pretty easily manageable without drugs. I guess that I decided that since it was not causing a huge drop in the quality of my life, there was no need to medicate. Also, even as adhb stated, they often only reduce accidents and leaks, not elimate them. I didn't see the point in taking the drugs if I'd still be wearing pads or diapers.

On the other hand, it's good to see that someone's experience has been positive. Hey, if the result is positive for you, great!

Hi Guys great to hear the patch is working for you ADHB .The stories I have read was not moral building to me.My incon is not as bad as alot of the people so Iam lucky in that respect.WELL Nothing real important jest wanted to give my 2cents worth.Ron