My Experience
What they didn't tell me
How I Overcame
You wake up from surgery and feel like you’ve been hit by a Mac truck, or worse. You’re not even cognizant of anything around you. Pain is your only reality. Relief is your only cure. Several days pass. You finally look down for the first time and see your whole mid section covered by a very large bandage. You can’t see your stoma yet. The next day, a nurse comes in and removes the bandage. She asks you if you want to look at the stoma. Of course you don’t want to look. You don’t want to think about having this hole in your side for the rest of your life permanently. You do look? It is almost too much to bare. This is your reality now. You’re stuck with this stoma. Despair, Depression, Frustration, and Anger, they all set in. Do you think about being happy to be alive? No. You think about an ostomy bag hanging out of your side for the rest of your life. You think, "Who will notice?" "What kind of life will this be?" "How will I cope?"The next day another team of people come. The hospital sends them in one by one like an annoying trickle of a leaking faucet. Each 'team' gives you pieces of information but not too much or you’d probably go into shock or depression. They know that and that's why they’re doing it. One piece of information at a time.
First, the psychiatrist comes to make sure you’re "o.k. about your surgery and your new ostomy". ARE YOU KIDDING!? The truth is the Doctor sent her in just to make sure you are "all right". She persists until you give her the right answer which she is looking. She lets you know she will be ‘visiting’ you every day to see how you are coming along. So you say to her, "What is it you want me to say? Just tell me and I’ll say it so you can write it down in your report and leave." She wants to hear you say, "Yes, I’m happy I had the surgery so I’ll have a new beginning at life now with my new stoma.’ So you say it to appease her; to get her out of your room. It’s a big lie. You don’t care, you don’t care about anything right now. After she leaves, you put in a request with the charge nurse that she never be allowed to return.
In the morning, the ET supply nurse comes in to bring you supplies. She tells you someone else will be in another day to show you how to use them. She just brings the equipment in and shows you a demonstration. That is the first real shock. You realize you will have to wear this bag every day for the rest of your life. The bag is horrendous. This visit is branded in your mind for the rest of your life. The next day it’s the ET nurse and her student assistants. They are all cheerful making jokes and chuckling while you are in your misery. They tell you they’re going to show you how to put the bag on for the first time, how to clean it, and take it off and put it on by yourself. You don’t even want to look at your stoma much less touch it! The ET group smile, laugh and act so cheerful as if this is just a normal day. You bluntly ask them how they would feel if they had to wear this bag instead of you. Would they still be so cheerful? They remind you the surgery saved your life and you are "lucky to be alive."
They make you change the bag by yourself. The ET nurse talks you through it. She doesn’t touch anything, just verbally directs you. You have to clean around the stoma, wait for it to dry, put the adhesive on, prepare the adhesive flange, put that on around the stoma, attach the ostomy bag to the ring clip, and finally they show you how to remove everything for emptying and cleaning. Let's face it, it's gross. It takes getting used to with a lot of instructions at one time. You won’t remember it all and it doesn’t matter. They’ll send another ET nurse tomorrow and then to your home until you get the hang of it. Right now its like you’re going through the motions but its someone else’s life. It still doesn't seem like it is happening to you.
Anger is now setting in. Having colorectal surgery is almost like a death in the family. You grieve the loss of a part of your own body and that’s the way it is. Day by day you learn how to take care of yourself, care for the new stoma and how to use the ostomy bags. You’re still not in reality. You are healing and still in recovery mode. You haven’t really started living your life... yet.
The first time you go out, that’s the first day. You feel like everyone is staring at you. You feel like every one can tell. They can see the bulge under your shirt. You are scared to death the thing will come unsnapped, or make a noise. You hold your side all the time, guarding yourself, afraid of being bumped into. Protecting your ostomy bag is your only concern. You don’t want to go anywhere where it is quiet. Church? Are you kidding? Someone will hear your stomach noises. You don’t want be in a room with other people. Watch TV in the livingroom with friends? No thank you. They might hear your stoma make a noise. You don’t want to go in a car with other people. You might have to stop and use a bathroom and you’ll have to give explanations. Anywhere closed quarters becomes off limits for you. You want to plan a response for every question. Every invitation has to be well thought out in advance before you say "yes". You want to be sure you have a way to escape. A way out in all you do. You start driving your own car everywhere and meeting people there so you can leave if you have to. Go with someone is out of the question.
You isolate yourself. You don’t feel ready to go out with friends. It’s easier not to go out. You only leave the house when you must. The grocery store maybe, the Doctor's office where they tell you how great you’re doing. Is this what "great" is? What kind of life is this? Leaking bags, piles of extra clothes in my car every where I go. Isolation leads to more isolation. Accidents happen. There was no way to avoid them. You never know when you're going to have an accident. This is horrible. I started carrying shampoo, bath towels, plastic bags, water bottles. Every trip in the car has to be planned like an elaborate camping trip. Then there are the new problems. Sleeping through the night becomes impossible. Every time you roll over the ostomy bag flops from side to side waking you up. It's like trying to sleep with a half full two liter taped to your side. You try to sleep on only one side in one position, it doesn’t work. When the bag fills up it sometimes inflates like a balloon. Sometimes you have leaking problems while you’re sleeping no matter how careful you are. Suddenly, you are awakened. Your worst nightmare has become a reality. Your ostomy bag has become detached while you were sleeping. You have to get up, take a shower, change all the sheets, change all your clothes, then, go back to bed and try to get some sleep.
What kind of life is this? You think, "If I’d known life was going to be like this I would never have agreed to have surgery" and "No wonder they don’t tell you all this until after the surgery. No one would every have surgery! There has to be a better way. This can’t be what my life will be like! I can’t even go to the beach any more. I can’t take my shirt off in public!" You crash and burn. Eventually the anger subsides. Determination begins to set in. I will find another way. This is not acceptable. There has to be another way. In all the world there has to be a solution to make my life better.
Enter Stealth Belt. Prototype by prototype I was resolving the problems one by one. Each belt dealt with one problem at a time. Then several problems combined were solved by one belt. Then, Stealth Belt started working, really working for me. I met a new group of friends. I didn’t tell them anything about my surgery. I wore my new Stealth Belt every day. After three months, I realized they didn’t know I had an ostomy bag. Finally, I had my privacy back! I don’t worry about my bag getting ripped off anymore. I don’t have problems with it coming unsnapped. I can't remember the last time when security was an issue.
Now I feel obligated to make available for the public the product that gave me my life back. I know Stealth Belt will work for you as well as it has for me. Now you can..
Go Anywhere. Do Anything.
-Richard Hamill
Stealth Belt Inventor
