Ok, first thing you need to realise is that 'normal' is just a cycle on a washing machine. :)
gfkak said...
i wore clothes that showed my stomach now if i do that people point and stare
Obviously, those crop tops and low waisted jeans may not be for you anymore but then again, lots of people don't wear them anyway - it doesn't mean you're any different to thousands of other people who don't wear them and haven't had ostomy surgery. Wearing those types of clothes is a 'want' but certainly not a 'necessity' :)
gfkak also said...
i also now have to sleep on towels at night incase it decides to leak on me.
With time, will also come confidence. Once you've experimented with different brands and found one that you're comfortable with, leaks should be few and far between and you'll gain the confidence not to need the towels anymore. Visit the different manufacturers websites and get as many free samples as you can from them.
http://www.coloplast.com
http://www.hollister.com
http://www.convatec.com
http://www.dansac.com
Most of them even have stoma nurses available so maybe ring them and talk with them about the best stuff for you to use to prevent leakages.
gfkak said...
Also when ever i leave the house i have to take a giant bag with me full of stuff to change it if it leaks along with a spare change of clothes incase it gets on that, plastic bags to put it all in, and towels to help me clean up and a hair dryer which i find useful to get it to stick better.
That stuff should all fit into a normal sized backpack that you can take with you. You probably don't need to take the towels - most people just take tissues, moist towlettes or something similar. Precut everything and if you use tape, precut that and stick it on to a plastic zip lock baggy so you can just peel the strips off. That prevents you having to take scissors and the roll of tape.
Instead of the hair dryer, try warming the wafer up with your hands for a couple of minutes. That works for a lot of people too.
A lot of people also just leave a spare change of clothes in their car boot to save them carting them around everywhere with them.
In time, you'll also think of other space saving and time saving tips.
Remember, you're ostomy is only new and you're still adjusting to it. Like anything, it's a learning curve, and as time goes on, you gain confidence and become used to it, it will just become routine to you and you won't even think about it until it needs emptying or changing.
gfkak also said...
ive tryed many different products and ive found one that can last almost 3 days sometimes how ever thats only if i put loads of tape around the edges of it to help it stay down.
Three days is great weartime (average weartime is about 3 - 4 days) - some people get more and some people get less. Keep experimenting though. You may eventually find a brand that stays even longer and doesn't need all that tape to keep it stuck down with.
On the other hand, maybe your skin just doesn't like bags being stuck for three days and you may need to go on to a routine where you change your bag every couple of days to prevent leaks. This is perfectly fine and acceptable too. You have to find what works for you.
gfkak said...
i dont see how i can possibly ever have ne thing even close to a normal life ne more but they dont seem to understand that is there something there not telling that would help.
You most definitely can lead a 'normal' and full life. I'd had my ileostomy for 30 years now (since I was 10 years old) and there's nothing I can't do except I don't have an excuse to spend lots of time on the loo reading.
I've travelled the world, ridden elephants, camels, rollercoasters, been rock climbing, swim regularly in summer, etc all without a problem. I know ostomates who regularly crawl through caves, bunjee jump, scuba dive and parachute! You will get there too!