Back in the early 1980's when I was a new ostomate I didn't have the benefit of the internet and Meet an Ostomate to learn and share ideas and concerns. But we did have a small group who met in Manhattan occasionally and I remember meeting a man who told me that he had his ileostomy for 30 years. I was amazed not only that he had it that long, but that he was still around to talk about it. I had no idea you could live that long with such a thing. Who knew? It's now 32 years later and, much to my surprise and delight, I'm still here! I've learned a lot by trial and error and more recently from the wonderful people on this site. Here's a list of some of the things I've learned. Hopefully you will find some of these ideas helpful and perhaps you can add a few of your own.
1) First and foremost, if you eat like a horse you sh** like a horse!
2) Keep an extra clip in your wallet or pocketbook in case you lose yours or it breaks. In an emergency, a binder clip that you use to hold papers together will work just as well.
3) Restaurants ususally don't like you to use their bathrooms unless you're eating there. I've found that hotel lobbies and bookstores are usually a good place to find a clean bathroom in NYC.
4) It's your scheduled day to change your appliance but you're a little tired or just not in the mood tho change it today. "I can get another day out of it. I'll change it tomorrow," you say to yourself. Not a good idea. In my experience I usually regret that choice.
5) Make sure not to let your supplies run too low because you can't always count on a quick delivery or your supplier may not have everything in stock. Also, double check your delivery when it arrives. 1 3/4 " flanges + 2" pouches = Big Problem.
6) Lighting a match or two and then blowing it out right away is a pretty effective and easy way to cover the odor after you've emptied your appliance when you're out. At home, a scented candle in the bathroom works great.
7) It's 3:30 in the morning and you think you might have to go to the bathroom to empty your appliance. My advice is to just get up and do it and don't think about it. If you start trying to evaluate whether or not you can make it until morning you'll never get back to sleep. I also keep a night light in the bathroom so I don't have to turn on the really bright overhead lights.
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Unless you want the walls of your bathroom to look like a Jackson Pollock painting, never, under any circmstances, attempt to change your appliance immediately after drinking two cups of coffee and eating a slice of cheesecake.
9) If you think you might be getting some blockage or are already blocked, a few gulps of mineral oil may help the blockage slide through. Fortunately, I can't remember the last time I became blocked, knock wood. (You'll have to take my word on this. I'm knocking a piece of wood as I type this).
10) I think that after blockage, the next worst problem we might have to deal with is a stomach virus. It's happened to me a few times and the fluids just poured out of my body and into my appliance like an open faucet. It's important to replenish fluids and electrolytes and my favorite drink for this is Gatorade. Also, my brother who is a physician recommended some easy to digest foods that will help to thicken the output once you're ready to eat again. He calls it the BRAT Diet which makes it easy to remember...bananas, rice, applesauce and toast. The applesauce should be plain with no cinnamon or sugar.
11) No, I'm not dying from internal bleeding. That's just the glass of Hawaiian Punch I drank with my lunch two hours ago which is now filling up my appliance with red liquid and scaring the hell out of me. I don't know if Hawaiian Punch is an international drink, but it's popular here in the U.S. It's a bright red fruit drink that seems to come out the same color it went in.
12) I don't use a belt, but I keep one in my desk drawer and it's proven to be helpful more than once, particularly on hot, humid days when my appliance became unexpectedly loose. It will hold the appliance well enough to get home safely to change it.
13) When it comes to having sex with a new partner (as I recall - I'm married now (LOL)) you will probably make a bigger deal about it than your partner. Confidence, a positve attitude and a sense of humor go a long way.
14) And finally, always remember that we don't have our ostomies because we chose it. It was (definitely) not elective surgery, but it did save our lives. Rather than sit there and say, "Why me?," we should say, "Thank you for another chance," and live our lives to the fullest. It's not how many times you get knocked down that's important. It's how many times you get up.
1) First and foremost, if you eat like a horse you sh** like a horse!
2) Keep an extra clip in your wallet or pocketbook in case you lose yours or it breaks. In an emergency, a binder clip that you use to hold papers together will work just as well.
3) Restaurants ususally don't like you to use their bathrooms unless you're eating there. I've found that hotel lobbies and bookstores are usually a good place to find a clean bathroom in NYC.
4) It's your scheduled day to change your appliance but you're a little tired or just not in the mood tho change it today. "I can get another day out of it. I'll change it tomorrow," you say to yourself. Not a good idea. In my experience I usually regret that choice.
5) Make sure not to let your supplies run too low because you can't always count on a quick delivery or your supplier may not have everything in stock. Also, double check your delivery when it arrives. 1 3/4 " flanges + 2" pouches = Big Problem.
6) Lighting a match or two and then blowing it out right away is a pretty effective and easy way to cover the odor after you've emptied your appliance when you're out. At home, a scented candle in the bathroom works great.
7) It's 3:30 in the morning and you think you might have to go to the bathroom to empty your appliance. My advice is to just get up and do it and don't think about it. If you start trying to evaluate whether or not you can make it until morning you'll never get back to sleep. I also keep a night light in the bathroom so I don't have to turn on the really bright overhead lights.
🔒 Login to see image
Unless you want the walls of your bathroom to look like a Jackson Pollock painting, never, under any circmstances, attempt to change your appliance immediately after drinking two cups of coffee and eating a slice of cheesecake.
9) If you think you might be getting some blockage or are already blocked, a few gulps of mineral oil may help the blockage slide through. Fortunately, I can't remember the last time I became blocked, knock wood. (You'll have to take my word on this. I'm knocking a piece of wood as I type this).
10) I think that after blockage, the next worst problem we might have to deal with is a stomach virus. It's happened to me a few times and the fluids just poured out of my body and into my appliance like an open faucet. It's important to replenish fluids and electrolytes and my favorite drink for this is Gatorade. Also, my brother who is a physician recommended some easy to digest foods that will help to thicken the output once you're ready to eat again. He calls it the BRAT Diet which makes it easy to remember...bananas, rice, applesauce and toast. The applesauce should be plain with no cinnamon or sugar.
11) No, I'm not dying from internal bleeding. That's just the glass of Hawaiian Punch I drank with my lunch two hours ago which is now filling up my appliance with red liquid and scaring the hell out of me. I don't know if Hawaiian Punch is an international drink, but it's popular here in the U.S. It's a bright red fruit drink that seems to come out the same color it went in.
12) I don't use a belt, but I keep one in my desk drawer and it's proven to be helpful more than once, particularly on hot, humid days when my appliance became unexpectedly loose. It will hold the appliance well enough to get home safely to change it.
13) When it comes to having sex with a new partner (as I recall - I'm married now (LOL)) you will probably make a bigger deal about it than your partner. Confidence, a positve attitude and a sense of humor go a long way.
14) And finally, always remember that we don't have our ostomies because we chose it. It was (definitely) not elective surgery, but it did save our lives. Rather than sit there and say, "Why me?," we should say, "Thank you for another chance," and live our lives to the fullest. It's not how many times you get knocked down that's important. It's how many times you get up.
