SABI,
I'm not sure where you're located, but in many larger cities there are groups called "Ostomy Mates", and they're experienced with these sorts of problems (bags not sticking to your skin). I know there's something on the WebCafe about ostomy mates but I don't recall where exactly it is. Referencing the different problems between neobladders and ileal conduit, I can tell you that I personally was incontinent for a very long time (at least it seemed so to me (it was about six weeks), but when I look back on it now it doesn't seem like it was so very bad. Something else that helps me feel that way is that it's been more than two years since my surgery, and once I dealt with the incontinence it's been mostly smooth sailing since then. I feel certain that once you get the hang of it, there will come a time when you too can look back and feel as I do, that it really wasn't that bad. That's what I hope for you, and I think you starting to think that will help you to get through everything now as well. There's a saying... "The power of positive thinking", where it comes from I don't recall, but it is very true.
I remember feeling isolated as well because every time I stood up my bladder emptied, and I'm talking about a cup or more of urine at one time. I went through lots of clothes and lots of adult diapers as well. I hated those things, but even the heavy duty pads weren't enough for the amount of urine I was loosing. Just know that you will be getting out there, and it won't be too much longer before that happens.
Now let me give you a little help in the consumption of water department, of course they want us to drink lots of water don't they. When I went to the continence clinic within the same clinic my urologists office is located, the doctor I saw told me that as long as my urine was a good color (pale yellow - yellow) then I was drinking enough water. What you need to look out for is if your urine starts getting darker that means it's concentrated and you're not drinking enough water. The other important piece of information is to restrict your fluid intake in the evening, like say start restricting it around 6 PM or sooner if you go to bed early. After awhile you'll learn how much you need to drink, how much is not enough, and how much is too much.
I hope these little bits of information will help things improve a little bit, you can even start restricting your fluids this evening and I bet you see some improvement with that one thing alone. Of course you might have a reason to drink some water at night if you have medication you need to take, just remember to try to limit it to only enough to get whatever it is down. If you find that you're thristy alot try chewing sugarless gum, except be a little careful because some people get diarrhea from the artifical sweetner. I initially chewed lots of it, but finally learned how to limit my intake. I'd put some in my mouth when I'd notice I was thirsty, but I'd just chew it for a short while just long enough to moisten the inside of my mouth and then I'd spit it out into a tissue.
Let me know how you do with cutting back on your liquids, but remember just don't cut back too much.
Lou
