Dear Janice
I had a hell of a bad time for the first year of my ostomy and got treated for depression by a very kind doctor. However, much of what brought me around was finding an ostomy system that works and yours, clearly, is not. The leaking and the fear of leaking was an obsession for me for a very long time and there were nights where my significant other could hear me crying in the bathroom at three in the morning because it was the third time in two days I had to change the appliance from leaks.
Here are some of the things I did which may or may not work for you but it is always always always a question of trying everything (an ET nurse can help and I hope like hell you have a good one like I did).
First, I began to be very careful of what I ate before bedtime. Starches were okay, but high fibre (which passes quickly) was not. Second, I measured my stoma and realized I probably needed a larger appliance. Because the problem was largely one of the liquid getting between the plate and the adhesive, I reinforced the adhesive with Hollister's Adapt rings (which are rings of super-gluey paste you can stretch into shape around the stoma). The trick was that I formed the rings to the shape I needed and applied them to the actual plate itself before I then applied the appliance. If no one has told you this: assemble all the material you need and cut it into shape, etc, before you so much as unglue a corner of the old appliance. (And if it is not a question of leaking and just a "normal" appliance change, keep track of all the times in the day when your bag does not fill up quickly those will be the times when a normal change can be made).
Another thing that helped immeasureably was the application of Opsite tape around the entire appliance after it was on (and very, very, very firmly pressed down upon so that the Adapt ring and the adhesive could hold hard on my skin). Ospite tape is that transparent, incredibly thin and very strong tape doctors and nurses use in the hospital and up here in Canada you can get a very long roll of the stuff for about $50 (and it lasts about 20 or so changes if you buy it in rolls like that). This DOES NOT prevent leaks but it does keep the leak in place if there is one, so sturdy is this stuff. So what happens is that if you have what I call a "catastrophic" leak, it doesn't automatically empty onto the bed or into your clothes. You notice it the next time you check.
All of this sounds very sticky (especially the pressing down firmly part) but if you're careful about removal (holding the skin down as you gently pull away the tapes and appliance and using gently alcoholized pads to help if necessary) you should not suffer any peristomal skin problems.
The other thing people forget is that their appliances are manufactured as cheaply as possible so they're not meant to resist everything and, very importantly, the appliance itself can be faulty. So when it happens as often as it does for you, phone the company you are using (Hollister, Convatec, etc) and get satisfaction. The numbers for all of them are available on their websites; don't waste your time with an e-mail, they never answer or even look at it, it seems. But don't be belligerent when you call the people who man the 800 numbers at these companies are very good and helpful people who want you to stay with them (they obviously make a fortune on each one of us!!!!!). They can also be your most important resource: they may suggest adaptations to your system (like with me, the Adapt rings) and will send you a free sample which makes all the difference. They will also replace a box of plates or bags which have been leaking too frequently. If they don't treat you well, change appliance companies! (My Hollisters helpers have been saints!)
Finally, and this is a private trick I passed on to my ET nurse and her other clients that worked for all of them: buy yourself a cheap iPod shuffle (the little ones which you can clip to your clothes or wear around you neck) and load it up with comedy or your favourite upbeat music and listen to this during the changes. You'd be amazed how a good laugh when you're up to your neck in the crap we all deal with can make all the difference.
I wish I could contact you directly by e-mail to talk you down like my nurses used to have to do with me, but, sadly, I can't afford the fees for this service here.
My very best wishes are with you...it is incredibly hard, I know, but you must get through. Life sucks for everyone, for us it just sucks in a different way and only for a bit, I promise you that.
Much, much affection
Gatan Charlebois (aka Froh)