It's been 3 months since my surgery, and here are some things that I've learned (for an ileostomy):
1. Change your bag when you want to, but never let it get more than 1/2 full. When I'm at work, I prefer to empty my bag whenever I use the restroom. When it's empty it lays flatter in my wrap and is less noticeable. When I'm at home, I only change it when I have to. If you let it fill up more than 1/2 way you run the risk of getting leaks.
2. Be wary of gas. This past week I've sprung 2 leaks due to gas. I was being lazy and not "burping" the excess air out (thinking it's just air..what's the harm?) Well the excess air causes a back flow of pressure and the output starts to leak under your seals. Now I'm not only aware of the gas, but of the foods that cause it.
3.Get the right support. I've never used a belt, but I prefer to wear a wrap when out in public, actually almost all the time except when I'm sleeping. If you order samples through convatec or coloplast they sometimes will send you coupons for ostomysecrets, that's how I ordered mine. I've just got one wrap in black that I wash every other day or so. As long as you are careful and don't get it dirty you may be able to go longer, it is just very hot here and the extra layer collects a lot of sweat so I prefer to wash it more often. (When I'm home I let the bag just hang free, my boyfriend and family don't mind, even before I switched to opaque bags! :ybiggrin: It's just nice to have it wrapped up in public, feels a little strange but helps me "blend" )
4. Shave the area around your stoma. When I first got mine and was doing research they only recommend that males shave. But most women, myself included, have some sort of fuzz on their tummys. I was experiencing a ridiculous amount of pain during changes because the wafers were waxing my skin every time. Now I shave around and use adhesive remover, it seems to be the perfect combination.
5. They itch. Even for no reason. My stoma and the skin around it itch all the time. Sometimes its from an irritation from food, sometimes it's from razor burn (see #4), sometimes it's from sweat, and sometimes you don't know what is causing it. My nurse says everything looks great and there is nothing to worry about, so I just deal with it, but it does get very annoying. I found that the sensura wafer is a lot less itchy for my skin, because it feels like a second skin (versus a paper wafer which for me is VERY itchy)
6. I don't wear jeans anymore. Before my surgery, 90% of the bottoms I wore were jeans. Now I mostly wear leggings, or dresses. I find that having tight clothing around my waist is uncomfortable and can affect my output.
7. Be prepared. I carry a small bag with me to work/long errands just in case. It has all of the supplies I need to do a bag change. Luckily, I haven't had to do one on the go yet, but I'm prepared if it happens! It's also helpful to set up an area specifically for bag changes. I like to lay down a towel on the sink counter and lay out all of my supplies. It helps to have everything ready to go before you start your change, and being near a sink helps me wash my hands in between steps. Especially if you're like me and always make a mess with the stoma paste!
8. Find out what your insurance covers. I spent $100 on supplies through an online wholesale company- before I found out that my insurance covers my supplies 100%. Now I'm applying for a reimbursement but its doubtful.
All in all, I don't mind so much having Stewie. I received the ileostomy during an emergency surgery in June, and plan on having it reversed in Oct/Nov. It took a few weeks to get used to, but once I learned how to care for it properly it's pretty smooth sailing.