“What I’ve Learned”

Paul T., Ostomate for 36 years (and counting).

  1. First and foremost, if you eat like a horse you shit like a horse.
  2. Keep an extra clip with you in your wallet or pocketbook in case you lose one or it breaks. In an emergency a binder clip that you use to hold papers together will work just as well.
  3. Restaurants usually don’t like you to use their bathrooms unless you’re eating there, but I’ve found that hotel lobbies, bookstoresand (believe it or not) police stations are good places to find clean bathrooms in New York City.
  4. It’s your regular day to change your appliance but you’re a little tired or just not in the mood to change it today. “I can get another day out of it. I’ll change it tomorrow,” you think 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 quick delivery or your supplier having everything in stock. Also, double check your order when it arrives. 1 ¾” flanges + 2” pouches = Big Problem.
  6. Lighting a match or two and then blowing it out right away does a pretty good job of hiding the odor after you’ve emptied your appliance.
  7. It’s 3:30 in the morning and you think you might need to go to the bathroom to empty your appliance. Just get up and do it and don’t even think about it. If you start evaluating whether or not you can make it until morning, you’ll never get back to sleep.
  8. Unless you want the walls of your bathroom to look like a Jackson Pollock painting, never 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 it slide through. Fortunately I can’t even 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 with my left hand as I type with my right!)
  10. I think that, after blockage, the next worst problem we have to deal with is a stomach virus. I’ve had it a few times and the fluids just pour out of my body 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 good, easy to digest foods that will help in thickening the output once you’re ready to eat again. He calls it the BRAT Diet which makes it easy to remember. The four foods are bananas, rice, applesauce (plain) and toast.
  11. No, I’m not dying from internal bleeding! That’s just that glass of Hawaiian Punch I drank two hours ago which is filling up my appliance with red liquid and temporarily 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 punch 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 and 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 your ostomy than your partner. Confidence, a positive attitude and a sense of humor go a long way.
  14. I’ve definitely learned to appreciate the little things in life. A crisp fall day, watching my daughter dance, the company of good friends, a weekend cocktail or a delicious meal. Did I mention a cocktail?
  15. And finally, always remember that we don’t have our ostomies because we chose it. It was not elective surgery, but it did save our lives. Rather than sit there and think “Why me?” we should say, “Thank you for another chance” and live life to the fullest. It’s not how many times you get knocked down that’s important. It’s how many times you get back up.