www.incontinentsupport.org

Well, an update.

I took the Oxybutynin and they made me feel awful. Really lethargic and a permanent headache. After talking on the phone with a doctor at my surgery (although not the one I originally saw), I was advised to stop taking them. The side effects cleared up straight away. However, I am still waiting to hear from the doc what his plan is, if I'm getting a referral to anyone and when. I'm going to call in a bit and see what I can find out.

I've also just got back from a short holiday in New York. I was staying with a friend and when he picked me up from the airport I told him about the need for nappies. He was cool about it, I was really worried about telling him but I thought that there was no way I'd be able to hide the need to carry a bag with me everywhere I went and the used nappies in his trash, so I thought that being upfront was the best plan.

I'm getting more used to wearing a nappy and that it's now just a part of who I am and what I have to do. Hopefully, the incontinence will go away as quickly as it started but who knows.

So I've just spoken with my GP who says he's still waiting to hear back from both the Continence service and the Urologist to see who wants to see me.
Regarding the Oxybutynin being an awful drug he said that's basically the problem with them and there's not much else he can prescribe at the moment.

Well sorry to hear you found out (like the rest of us), that medications for incontinence just don't work most of the time. Given their failure rate, it's a wonder doctors even try them, let alone push them on to us so much.

Thanks
I get why they try them, in theory the drug is supposed to do the job and I guess for some people it will. However, it appears that for a lot of people, they just don't work. Shame as I was secretly hoping that the drug would be the cure. I could live with taking a single tablet once a day for the rest of my life if it meant I didn't feel like this.

On to feelings... does anyone else feel useless and down with their incontinence? The more I think about it the more I realise I'm basically like a baby, needing to wear what is effectively a nappy because I can't control my bladder. I hate it and I'm really hoping that someone can come up with some sort of cure. How do you mentally get around it? How do you get your mind around feeling useless? Am I the only one that feels like this or have you all been there and it's something that I'll get used to eventually? (sorry for the moan, it's one of those days where things are going wrong and I've just had enough).

I'm sorry your feeling this way drew. But let me tell you what I realized, I've been bowel and bladder incontinent for nearly all my life, 19 years is a long time of experience for something. And having no control or feeling of going whatsoever is really a morally degrading feeling. Even now when I'm having 3-4 bowel accidents a day and end up without wetting the diaper as well it can get really bad. In highschool I got really depressed, I would cry in the school bathroom not be able to move on with cleaning up and changing because it was so gross for me. It came to a point where I didn't want to go to school and just shut down. I don't want to get into the really depressing bits of it but I got through that phase, I realized that this may be the situation for the many for free years to come. So whatever end I have this is what I have to deal with at the moment. So I decided that I'm going to plough through everything as best I can and enjoy whatever I can enjoy, achieve whatever I can achieve. I've had another problem other than the incontinence I'm dealing with but that just makes me stronger. Just keep going I guess. Feeling crappy for myself didn't and won't get me anywhere.

Hi Drew. I think overcoming the negative thoughts associated with incontinence is a tough job to handle. There is essentially a grieving period where we mourn that which we have lost. I cannot tell you to get over it as it is not that easy. It's especially tough if your issues happened very suddenly and there was no acceptance period. That's what happened with me. My incontinence took a few years to fully develop to where it is today. I started with guards and light dribbling. Now I know what the problem is. I have dysautonomia. It's a nerve condition that affects the involuntary systems of the body. I am completely incontinent of bladder and bowel. I just do the best I can with what I can. I try not to let it get me down. Sometimes it's frustrating such as when I leak in the bed. But overall, I try not to focus on the things I can't do and instead, concentrate on the things I can. Such as spending time with my family. Look up the stages of grief. Your probably just getting started. You'll probably find many people here have had time to adjust and accept their incontinence as just another hurdle that must be overcome. I'm to the point that it does not really bother me anymore. If you're self conscious about wearing diapers in public, the general consensus is that the general public could care less about your underwear. I think as time passes, it may be sad to say that many people just get used to it. You may or may not. I just try not to dwell on it. It's a part of who I am. You are perfectly normal. Your normal just looks different from mine and everyone else's. Everybody is different and we all have problems to face. It's how you adapt and overcome those challenges that defines you. Not the style of underwear you wear.

When life gives you lemons you learn to like lemonade. When life puts you in diapers you learn to like wearing diapers (though a lot easier said than done I know). You'd think for me I would have been ecstatic to have an excuse to be diapered 24/7. The reality was it took me a full decade to come to terms with needing them in spite of still always having liked them. There is a HUGE difference in needing them sometimes to needing them always. More than most people will ever realise.

All I can say is just take it one day at a time. Eventually you will come to realise they aren't an end to your life, but a means to keep on living it. Eventually you will also come to realise nobody notices, and even if they do you will eventually come to not really even care if they do. It does get better with time, really.

It is easy to say, but hard to do. There is no need to feel useless because you have to wear a diaper. No one needs to know, most people do not care what kind of underwear you use. I think of my diapers as just my normal underwear. I do not let the fact that I wear a diaper slow me down. I do what ever I want to do. My lifestyle has not changed because I wear a diaper instead of “shorts” under my pants. My advice is to do anything that you want and not to be concerned about wearing a diaper. As I said who cares if you wear boxer shorts, jockey shorts, or a diaper.

Before I retired, I worked as a registered nurse and saw many people with a lot of problems. Some were adults wearing diapers, I just gave them the best care I could, I did not think twice when I saw them wearing diapers. Now that I have to wear a diaper I do not dwell on it, I just go about my life and live it to the fullest I can.

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RetiredRN

I don't have the "I can't do anything productive" (useless) feeling, because I have a fairly high level of functionality. Despite having had a stroke, I can do just about everything anyone else routinely does.

However, I don't have the bull by the horns in my life, and for me, it's the frustration of literally not having control in a very basic sense that gets me down. I'm more inclined to feel old and decrepit - and I am - old that is. Not decrepit yet, I hope. I'm pleased and grateful when I'm at the toilet and I don't wet the floor and/or my clothing as I pull down my pull-up to urinate. However, to completely eradicate the possibility of a mess would require me to stop trying to use the toilet altogether for bladder voiding. I consider it a decline in my physical strength/ability and independence to involuntarily void into a pull-up/diaper, and I'm opposed to just giving up and not even trying to make the toilet. Timed voiding (emptying my bladder into the toilet several times throughout the day before it gets too full to hold the urine) helps me maintain a sense of limited control and independence.

W.

I think, as humans we enjoy challenges. Mountain climbing, extreme sports of all kinds, difficult problems, are just some of the challenges we go out of our way to seek and overcome. And, bungee jumpers, parachutists, wing-suit flyers, to name just a few, all feel accomplished by surmounting the challenge of their sport. If incontinence is not so theatrical as those, it is nevertheless no less challenging. And overcoming it, dealing successfully with it day in and day out should be just as rewarding as swimming the Atlantic, or walking a tightrope between high rise buildings. I get a secret pleasure when the folks around me, sometimes including my family, make unreasonable or impossible demands on me. Those demands are evidence that I am managing my issues so well that they think I'm as normal as they are. That is success, and it is rewarding.