My first recommendation would be, get a bag. A tote bag, or backpack. And load up your supplies. We ALWAYS carried our bag with us. My Dad used a one piece system. But we always had 2 or 3 ostomy bags with us. And the same number of rings. We had a couple of washcloths. Paper towels. A few small trash bags. And a pair of scissors. It's important, to use the scissors just for this purpose. Nothing else!
In our bag, we also had a cylinder, that we received at the hospital. It was something the nurses used, to empty the bag, in the beginning. And it became a lifeline. We'd use it, to empty my Dad's ostomy bag. Whether it was in a restroom. Or sometimes, it happened in our vehicle. I'd recommend finding some sort of vessel, that works for you.
In our vehicle, we always carried a jug of water. And some foam soap, that we also received from the hospital. We also had a spare cylinder, and a small wash tub. We were so lucky, that the hospital supplied us, with so much stuff.
Also in our vehicle, we carried extra clothes. I'm pretty sure, if you are somewhat familiar with an ostomy bag, you've experienced a "blow up," before. And so did we. Even the most well planned outing, can have a hiccup. Or two. Sometimes three.
Make sure, to have supplies for yourself. In terms of hand sanitizer, wipes, and gloves (if you use them.) We never did. But I know, lots of people do. Make sure, to carry these things as well. Nothing is worse, than being stuck somewhere, without them. Imagine cleaning up your loved one. And realizing you can't clean your own hands?
We were also lucky enough, to have a large vehicle. A van. With window coverings, that made it a semi-private area. So if we did experience a "blow up," we could clean my Dad up. Without having to worry about people watching us. I know, not everyone has this luxury. But it was nice.
But then, my Dad was 81, when we were going through this. He struggled to do a lot for himself. Not just because of his age. But his failing health. If you're younger, more than likely, you'll be able to go to the restroom by yourself. To empty your bag. Or clean up, after a problem. But my Dad needed help.
Another thing to look for, are "Family Restrooms." We did this often. Most of the time, we'd look for one, the minute we got somewhere. Or we'd ask, if it was possible, for my Mom or I...to go with my Dad to the restroom. You'd surprised, at how many people are so helpful. In places that didn't have "Family Restrooms," many times a man, would clear out the restroom for us. We'd go to the "Handicap Stall," and do our business. Usually just taking 5 minutes or so.
My other big recommendation would be, monitor your ostomy output. Pay attention to when you eat, and when your bag needs to be emptied. Soon you'll notice a pattern. My Dad usually had about 10-20 minutes, after a meal. If we were going out, and had eaten, we'd wait. Until his ostomy, did it's thing. We'd empty the bag at home. And then head out.
If we were going out to eat, and knew we'd be out afterwards, we'd hangout at the restaurant a little longer. If we were going home, we knew, how much time we had. But you'll learn this. Over time, it will become easier. In our case, the pattern developed almost immediately. And it stood the same, through our entire journey.
I'd also recommend, getting to know your ostomy. Know what foods, create more output. Or a faster output. What foods, aggravate the situation. Once you become familiar, it will assist you in so many ways. For us, there were certain foods, that created a ton of gas. If my Dad ate them, we knew we had to "burb" the ostomy bag...pretty quickly. And often. Or else, we'd have a "blow up."
We also learned, during our "Chemo Week," things changed. The output was different. A different consistency, smell, and timing. We had to stay on top of things. But even then, "Chemo Week," had it's own schedule.
In the beginning, to learn about these things, I wrote everything down. I got a planner, that was used, just for this purpose. So we could learn, about the osotomy output. Soon, I saw all the patterns. It made planning outings, less daunting.
My biggest suggestion would be, just be prepared. Don't stay home, just because of the ostomy. There will be messes. No matter, how hard you plan. Just be prepared. Take a few towels with you, some extra clothes, and your supplies. But get out. Make your first few outings, short. Maybe close to home. And as you gain confidence, try going out, for longer periods of time.
As we got comfortable, we'd go out to eat. Which usually took us 2-3 hours. We'd take my Dad to the casino, for 6 or more hours. We'd go on road trips, shopping, to family get-togethers, visiting friends, and so much more.
My last suggestion is, don't leave your supplies in your vehicle. I know, that all these people say, the heat doesn't affect your supplies. But for us, it did. We noticed this, the first time a supply order, was delivered in the summer. While we were at chemo. And it sat in the heat, all day. Those bags, and rings, did not work well. In fact, prior to that, a bag would last 5 days. With that batch, we'd maybe get a day. Then one day, we left our supplies in the car, for a few hours in the afternoon. When we used those supplies, we had the same issue.
After that, we knew, that supplies had to come with us. Even if it was inside a store, to a family outing, wherever. We also made sure, that deliveries happened, when we were home. No one wants to have a "blow up," only to clean up and change...then have another. Because it's been exposed to the heat. Also, we live in the southwest. And it gets well over 100 degrees, in your car, during the summer.
No matter what the issue, I'd say, don't be afraid to go out. Have fun. But be prepared. Not just in terms of supplies. But prepared, that an accident will happen. Eventually, it will happen to you. But never let that stop you. You still have to live. And enjoy life. Just be prepared. ❤❤❤
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