Hey y'all! It's been a little while. I over-extended in December (don't many of us) and have been fighting sickness since the week after Christmas. During that time, I've thought of so many things I should be writing about. Yesterday, this just starting flowing out. Hope it touches some of you.
My ostomy saved my life. Since I have no colon, I imagine I will have it for the rest of my life. It has also drastically changed my life. I have to think, now, about what and when I am going to eat. If I am going out, will I be able to able to empty the bag? Will I be in a situation where the stoma might make noise? While my diet was in no way normal before, it is not now and will never be again. For the rest of my life, I will have to be concerned about hydration. I have to think about when and how much I eat before bed or I may be up all night or have leaks. Thinking about clothing is completely different. Not because of vanity or being concerned if the ostomy bag shows, although that is part of it but because you simply can’t have waistbands on your stoma. Don’t get me wrong, I wouldn’t go back to how I was living before my ileostomy for anything in the world.
It also breaks my heart to know that children have to learn to deal with all of these things. I want them to be teens and sleep 10 or 12 hours without having to worry about emptying a bag. I want them to eat all the popcorn, peanuts and candy they want at a movie or ballgame without worrying about a blockage or hunting the nearest restroom. I don’t want them to have to carry a bag of supplies with them everywhere like a diaper bag. I don’t want them to have to run to the teacher or nurse at school because they have had a leak nor have other kids laugh.
I want awareness and people to know that having a bag is not a “bad” thing. That having an ostomy is nothing to be ashamed of or hidden. I also want them to know the drawbacks and how it really affects us, especially children, so they will be more understanding in all those situations when we need them to be. Those times when we need to use the handicapped bathroom. The times when we really do need to pick a different restaurant so we can find something we can eat without having to choose the same old plain grilled chicken breast, no sides, once again. So they will help me be discreet, if I am ever out in public and need to hurry to make a change because of a leak instead of looking on in horror.
I want better medications before ever reaching the point of needing the stoma. Medications that don’t have awful side effects along with them like hair loss, severe fatigue, nausea, vomiting, mood swings, weight gain and loss and increased risk of cancer.
I want tests that do not rob you of any dignity you ever had and leave you feeling violated. Tests that don’t cause you further pain and humiliation and leave you feeling sicker for days.
Most of all, I want a cure.