Ileostomies work when “THEY WANT TO." And I stress “THEY" want to. Not when you want it to. This is a known fact. Normally, the sight or smell of food will send that ileostomy into high gear just a chugging away and promptly filling the pouch whenever the smell or taste of an appetizing food product is detected. You can count on this being the rule until you actually “WANT it to work so you can go somewhere. I have seen it over and over again. If I want to grab a bite to eat before hitting the highway on a journey, it will not behave normally. I do believe it plays games with me. If it behaved normally, I would eat, go to the bathroom, empty my pouch and be done with it. Does this happen? Noooooo!!! Of course not. When I want and expect it to work immediately like it usually does, it waits until I am on the highway with no place to stop for the next three thousand miles (slight exaggeration here, but anyone with a full pouch will feel that way). Or better yet, in the middle of the grocery store it fills up right there in the middle of the canned goods. HAVE YOU EVER TRIED TO FIND A BATHROOM IN A GROCERY STORE? Ain't going to happen, bud!!!
Meetings - This is another favorite of mine. Picture yourself in the boardroom, surrounded by executive types in their suits, ties and somber attitudes. All is going fine until there is a quiet moment while contemplating a major point made by one of the members, when out of the blue, the little beggar on your abdomen decides to sing an aria. Ileostomies do make noise. This is a fact. However, I have never figured out how they time their vocal outburst to occur during a 30 second lapse in an important business meeting. Happens every time. (Hey, you never know, maybe what they're saying makes more sense than the others in attendance at the meeting. I'll have to contemplate that one). Just for information purposes only, I checked with Midas Muffler and they don't make any kind of muffler for this kind of system.
Sleeping - another nightmare for ileostomates. You know, there are times I think I would barter with the devil himself if I could just once have a good night's sleep and not have to get up to make that long journey to the bathroom. Nighttime can be a vicious circle. The ileostomy tends to “sleep" (sort of) while the body sleeps. If for any reason one should wake up during the course of the night, Mr. Ostomy wakes up, starts working and the result is a trip to the bathroom. Now this trip to the bathroom will take a couple of minutes and tends to wake you up pretty good. The result of waking up pretty good is to fully wake up Mr. Ostomy who decides, "What the heck, I'm awake now, might as well get busy!" Well, o.k. folks, now there is no way you can go back to sleep without at least making yet another trip to the bathroom. It's a vicious circle, the more trips to the bathroom, the more awake you get and the more energetic Mr. Pain in the Neck Ostomy gets! One of these days, I'll figure out how to sleep on the toilet and keep us both happy.
Mornings - most people who share a bed with another will wake up, yawn, stretch and perhaps snuggle up to the one sharing their bed. For me this is totally and completely incomprehensible. Not because we have a really big bed and I can't find my husband or anything like that, but because the pouch I am wearing has, by morning, inflated to the size of the Good Year blimp. I dare any of you to place a beach ball between you and your bed partner and see how close you can get (once again, it ain't gonna happen!)
Middle of the night tragedies - anyone with an ostomy will know of which I speak. There you are, in a sound sleep and you awaken suddenly to a warm feeling (no, the electric blanket is not on the high setting). You open one eye, assess the situation, tap your spouse on the shoulder and announce, “No, I am not feeling frisky and whatever you do, don't roll over." Translated from ostomy speak this means, “get the heck out of bed because my pouch failed and there is icky stuff everywhere." On the bright side, someone that gets everyone out of bed to change the sheets at 3 am can be considered one heck of a housekeeper. Am I right?!
Murphy's Law - there is a special Murphy's Law that applies to ostomates. Now most of us folk that have to wear appliances know how long they should last before they need to be changed. This rule only applies if you have supplies on hand. If you should run out of supplies and suddenly remember on Sunday night when your suppliers are closed, you are asking for trouble. Even if you normally can go five to seven days with your appliances, you can change Saturday and have a failure on Sunday. (Note: this will only happen if you don't have any supplies on hand. It will never happen if you are stocked up).
Enough of the negative, now for the positive.
My son is one little boy who has grown up knowing and accepting that his mom has an ostomy and doesn't think any less of me because of it. (I lived in mortal fear for years of finding a picture of his “mom and her different plumbing" created by my pride and joy in the hallway at school, but so far, so good). He knows that exceptions sometimes have to be made because of my ostomy, but for the most part, life goes on. It's not really a big deal.Maybe if more people were up front about their ostomies, the stigma attached to having a “Bag" might slowly disappear. For those of you who have one, we can make the difference. Don't be afraid to admit you have one. (No, this is not where you go out and rent a billboard to advertise the fact) but be honest with people and don't be ashamed. You are a survivor!! If you weren't a survivor you wouldn't have an ostomy and wouldn't be reading my ramblings.
In all honesty, I wish the circumstances were different that would have prevented the necessity of having to be a “Bag Lady" but they aren't. So, until technology can create an alternative for me and thousands of others like me, I have to be satisfied with being the “Lady from Glad." (I'll give that white-haired guy from that garbage bag company a run for his money).
For those of you who have a new ostomy, things are going to happen that will be devastating at the time but keep in mind, whatever has happened to you, has happened to others before. You have the right to be upset, but try to find the humor in your situation. We've all been there.
