Be like the Boy Scouts – “Prepared”

An important thing to remember is, the Boy Scout motto:  Be Prepared..When you are first trying the appliance (bag) you might have a leak. It usually depends on how much liquid you are taking in, but it might be the fault of the appliance. In any case, each time you leave your home, you should have the following items pre-packed and ready to go.

Two new bags/appliances
Any adhesive items you use to attach it
A paper diagram and pen to show how to cut the hole, it takes practice
Small scissors to cut the appliance the desired width,
I suggest the medical type with rounded points
Two washcloths
One hand towel
Wipes, the non-alcohol type
Sanitary hand wipes, not for use on ostomy skin
Two pairs of underwear
One pair of pants, I carry a black pair because it will match anything
A pair of socks just in case the leak gets out of control
The grey ostomy disposal bag you receive with the bags for the used one
Ziplock bags to carry the wet items home

Sounds like a lot, doesn’t it? I have used everything on the list when first starting out. If you read my initial post, you know why. It was Leak City for a while. Everything fits in a backpack or large purse or bag, messenger bag, briefcase, etc. I’m writing this for men and women. This bag will save you embarrassment in a day of sight-seeing, shopping, or work. I’ve been there. It may be that you are perfectly fitted the first time and never have a leak. Great! But it only takes once to make you wish you took a pre-packed bag. I recommend two appliances because until you get used to trimming the hole for the ostomy, you may accidentally cut the appliance. You cannot mend it with tape. It’s no longer useful, just dispose of it. You can always precut the bags at home and pack them. That’s easier than trying to wrestle around with stuff in your lap in a small restroom booth.

Now that it’s been a year, my ostomy is the size it’s always going to be, so I don’t carry scissors, I use the pre-sized, already cut type. I don’t use any adhesive cream, lotion, spray or powder, so that lessens the bag bulk. I do carry two appliances, washcloths, and non-alcohol wipes, underwear, and a pair of pants. I’d rather be safe than sorry. Restrooms aren’t always ideal so I carry my own washcloths, etc.

I have my routine down, and a trip to a restaurant, shopping center, whatever, is much more enjoyable.You may not need any of this information. But if you do, I hope it’s useful.

The following website is a good one:   fightbladdercancer.co.uk

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Accepting Change

The dragonfly depicted on my front page is a traditional symbol of change. That’s one of the reasons I chose it, and because it is beautiful.

When you have bladder cancer, your whole life does change. You have many doctor appointments, scans, and tests. All of these change the perspective of your life and future. No matter how positive you try to be, there is always a knawing in the back of your mind of how it will all turn out. I know this feeling well. Every test, and every scan, you have to remain hopeful and positive. Because you have no choice. Think, know that you are going to survive, you’re going to get well. That’s where support from family, friends, nurses, and doctors come in. They are also the ones you have to express your feelings to. Let them in and help you. This is the time to bring humor in, because a lot of this condition is funny and you have to remember that. Possibly the following might help you see it.

There are many advantages to having a urostomy.

  1. You never have to worry about sneezing, laughing, coughing – you’re totally covered! It is impossible to unexpectedly pee your pants in these situations.
  2. If you hate putting on a swimsuit in public, no worries! Unless they invent something new, there is no way to go into a swimming pool without some type of adult diaper. This may appeal to you but not to me. I wouldn’t think it would be too attractive under a swimsuit, but its totally up to you.
  3. This is for women only: if you have always envied men who are able to stop on a long trip or on a woodland outing because they don’t need to wait or look for a restroom, now you won’t have to. A large bush or tree is all you need because with an ostomy you can pee like a man!
  4. This section is for anyone who hates hygiene. If you do not like to take a daily shower or bath, no problem! They do make covers you can use in the shower to keep the ostomy bag dry, but I have not found them to work well. I tried to ask the manufacturers if they would work in a pool so I could swim for exercise, and they do not encourage it.
  5. This section is for people like me, in wheelchairs. You have to learn to “embrace the bowl”. Simply put, you have to roll up to the bowl, embrace it with your knees, and empty. Unless of course you like cleaning and sanitizing the area every time, this is the system I found works best.
  6. Unless you’re an Olympic gymnast, it’s practically impossible to empty a bag while sitting on the stool. And unless you are a man, who has good aim already, you might have to practice a bit before you can accurately hit the target.
  7. I know some of you are very curious about having intimate relations with a urostomy. I do not have personal experience with this, but I have read about it and apparently there is a cap type device that you can temporarily apply. I can’t imagine how this works, especially for a length of time. Essentially it is a quite small version of the bag. I wish much good luck to anyone who wishes to experiment with this. Your imagination will soar!

I hope you found a chuckle in my steps. I encourage you to find the “funny” in your own situation. I make light of this serious condition because it’s there. It’s always going to be there and you have to learn to accept it for what it is. It’s just another part of you, sort of like a double chin or pinch an inch. You might not like it, but you live with it. And on the upside you’ll be cancer-free. And living is much better than the alternative.