I bitterly hate my colostomy.
No, not because it's ugly. I don't care about that. I'm not embarassed or ashamed, why should I be? It's not a punishment for bad behaviour so why shame? No, I hate it because it's a bag full of shit dangling off my belly. that alone I suppose I could learn to live with if I could ignore it for a moment of the day.
I hate it for the following variety of reasons.
It stinks. I don't care that the pros insist they don't stink, it does. It's faint and I doubt anyone else notices it, but I do. It always stinks, sometimes worse.
It runs when I try and sleep. Oh yes, if I try to sleep at night or trying to nap, that thing will start putting out poop, guaranteed.
Now you'll be saying "oh, so what, let it run." Yeah, uh huh. See, it does run and it doesn't work as advertised. Nope, the poop comes out, clings to the lump of obscene red flesh that is my "stoma" and piles up against it, contained by the plastic ring of my colostomy wafer. I use a bag that snaps on like tupperware and the snap ring contains the poop and it doesn't travel naturally into the bag. It just piles up. When it gets to the point that it's straining against the front of the bag, it still doesn't travel to the rest of the bag. It forces itself between the stoma and the weird sticky plastic that glues the bag to my skin, forcing the plastic away from my skin. the poop squeezes out between the bag and my skin to burst forth in what's known as a "blowout." Essentially it fills my pants and covers my belly with raw feces. yep, smear some feces around on your belly, work it into your underwear band your pants, and so forth. If I'm asleep, this begins to dry and I have dried poop glued to me. Same stuff they use to make strong waterproof flooring and walls in some parts of the world, although they use cow dung, not human. Gross eh? I've had it do this while I was out in public and not paying close enough attention to it. I've had it happen overnight. Very disgusting and horrifying. So there I am trying to clean the stuff up and not get any of it on the bathroom sink, floor, or in the tub and even washing it in the washer freaks me out. I know all about e coli. Horrid.
So when my stoma is active, I reach into my pants and push the poop away from the stoma with my fingers through the plastic bag. Sometimes that's still not working and I take the bag and my belly in one hand and shake it violently to force the poop down with centrifugal force. Here I sit shaking a bag of poop attached to my stomach, the bag dangling over my pants, unable to pull the waist band up or it will cause a blowout. I can't sleep because I have to keep manipulating the output. I can't go out because I have to let the bag swing free and manipulate the output. Can't drive as it'll do this on the freeway, covered in heavy overclothes and seat belt. Can't be standing in a public place playing with my poo. Soo I get stuck at home. Sitting at home playing with my poop in a bag feeling gross and disgusting and trapped and sleep deprived.
Nice eh? but I'm supposed to be grateful and embrace this new me becuase it saved my life! I don't WANT to live like this!
So I started this process called irrigation. I couldn't get help from the nurse, she patently refused to so much as discuss it with me. So I don't know what I'm doing. So it upsets me easily because I get frustrated.
Irrigating is about putting enough water up in your colon that it will expell its foul contents all at once. It's unbelievably nasty. Think of diarrhea coming out your belly button. You clip a plastic sleeve over it using either the snap ring of the wafer or a belt that holds it tight to your skin. The sleeve can either be open at the bottom and dangling in the toilet or clipped and hanging free, dangerously full of nasty wet crap. I put it in a bucket at my feet and sit by the toilet till it's done.
When I began I had a lot of trouble but eventually I got to where it was pretty regular and I could go two days with nothing but a clean plastic bag attached. The wafer and bag would stay clean and clear and I could forget about it. I was going out, I was wearing clothes that weren't ballooned out front. I slept all night. I could lay on my left side like I have all my life and sleep worry free. But then it stopped doing it. The last two months I've been failing and failing. I put in the equipment and the water just squirts out around it, nothing going in. If i manage to stop the squirting I've stopped the water. Now it even hurts and I'm not even trying. I had such a panicked severe melt down on saturday I was ready to kill myself. Tom came by and got me high and calmed me down but today, it's pooping constantly. thick nasty output that doesn't fall into the bag and pain when big lumps go through. I am beside myself with sorrow. I can't do anything. There's this blasted bag and I'm shaking it and massaging it and can't make myself get up and get anything done. I managed to wash dishes today, that's it. I want to take a knife and carve the terrible thing off my stomach. I know better. It's just a constant image in my head. I hate it so bad. I've been on a facebook group for it, so I have been seeking advice. The only real advice I ever get is that I need to relax more. What the fuck does that mean? First off, HOW do I relax when I'm getting angry and freaked out about the whole thing and it's horrifying me and ther'es poop involved. How in hell do I stop caring and embrace filth and disease? I can't unknown what I know about it. How do I calm down when I'm sleep deprived? Furthermore, what exactly am I relaxing? What does "relax" actually mean? Fall down in a faint and act comatose? Well that'd be completely relaxed, wouldn't it? Somewhere between comatose and hysterical is this magical state of "relax" and nobody ever defines it. It's clearly not the state of emptying your mind and breathing deeply because I do that every time. If I just shove the fucking cone in and stare off into space it does not solve the problem. I just wind up sitting like that until I stop. when I've had success it entailed a lot of wriggling and pulling and pushing and a hand on my belly squeezing and pulling and pushing on the flesh under the skin. A complicated dance of cone, hand, and torso sitting back but not too far back, erect but not too erect, squeezed in with an elbow on the vanity, back pushing the toilet tank lid off the back, head twisted watching the water bag for signs of movement, then looking backdown to see if the flow is coming out or going in, at which point the flow stops again... Oh it's really too much. To think there is never any escape from this, this new reality. Never any hope of ever having a normal bowel movement again. I feel so wretched and miserable. Nobody can rescue me. Nothing can be done to release me from this. Nobody can do anything and the medical community won't even try. All those jackasses have to say is that I need to relax and embrace with joy this life saving solution to my colon cancer.
I hate it for the following variety of reasons.
It stinks. I don't care that the pros insist they don't stink, it does. It's faint and I doubt anyone else notices it, but I do. It always stinks, sometimes worse.
It runs when I try and sleep. Oh yes, if I try to sleep at night or trying to nap, that thing will start putting out poop, guaranteed.
Now you'll be saying "oh, so what, let it run." Yeah, uh huh. See, it does run and it doesn't work as advertised. Nope, the poop comes out, clings to the lump of obscene red flesh that is my "stoma" and piles up against it, contained by the plastic ring of my colostomy wafer. I use a bag that snaps on like tupperware and the snap ring contains the poop and it doesn't travel naturally into the bag. It just piles up. When it gets to the point that it's straining against the front of the bag, it still doesn't travel to the rest of the bag. It forces itself between the stoma and the weird sticky plastic that glues the bag to my skin, forcing the plastic away from my skin. the poop squeezes out between the bag and my skin to burst forth in what's known as a "blowout." Essentially it fills my pants and covers my belly with raw feces. yep, smear some feces around on your belly, work it into your underwear band your pants, and so forth. If I'm asleep, this begins to dry and I have dried poop glued to me. Same stuff they use to make strong waterproof flooring and walls in some parts of the world, although they use cow dung, not human. Gross eh? I've had it do this while I was out in public and not paying close enough attention to it. I've had it happen overnight. Very disgusting and horrifying. So there I am trying to clean the stuff up and not get any of it on the bathroom sink, floor, or in the tub and even washing it in the washer freaks me out. I know all about e coli. Horrid.
So when my stoma is active, I reach into my pants and push the poop away from the stoma with my fingers through the plastic bag. Sometimes that's still not working and I take the bag and my belly in one hand and shake it violently to force the poop down with centrifugal force. Here I sit shaking a bag of poop attached to my stomach, the bag dangling over my pants, unable to pull the waist band up or it will cause a blowout. I can't sleep because I have to keep manipulating the output. I can't go out because I have to let the bag swing free and manipulate the output. Can't drive as it'll do this on the freeway, covered in heavy overclothes and seat belt. Can't be standing in a public place playing with my poo. Soo I get stuck at home. Sitting at home playing with my poop in a bag feeling gross and disgusting and trapped and sleep deprived.
Nice eh? but I'm supposed to be grateful and embrace this new me becuase it saved my life! I don't WANT to live like this!
So I started this process called irrigation. I couldn't get help from the nurse, she patently refused to so much as discuss it with me. So I don't know what I'm doing. So it upsets me easily because I get frustrated.
Irrigating is about putting enough water up in your colon that it will expell its foul contents all at once. It's unbelievably nasty. Think of diarrhea coming out your belly button. You clip a plastic sleeve over it using either the snap ring of the wafer or a belt that holds it tight to your skin. The sleeve can either be open at the bottom and dangling in the toilet or clipped and hanging free, dangerously full of nasty wet crap. I put it in a bucket at my feet and sit by the toilet till it's done.
When I began I had a lot of trouble but eventually I got to where it was pretty regular and I could go two days with nothing but a clean plastic bag attached. The wafer and bag would stay clean and clear and I could forget about it. I was going out, I was wearing clothes that weren't ballooned out front. I slept all night. I could lay on my left side like I have all my life and sleep worry free. But then it stopped doing it. The last two months I've been failing and failing. I put in the equipment and the water just squirts out around it, nothing going in. If i manage to stop the squirting I've stopped the water. Now it even hurts and I'm not even trying. I had such a panicked severe melt down on saturday I was ready to kill myself. Tom came by and got me high and calmed me down but today, it's pooping constantly. thick nasty output that doesn't fall into the bag and pain when big lumps go through. I am beside myself with sorrow. I can't do anything. There's this blasted bag and I'm shaking it and massaging it and can't make myself get up and get anything done. I managed to wash dishes today, that's it. I want to take a knife and carve the terrible thing off my stomach. I know better. It's just a constant image in my head. I hate it so bad. I've been on a facebook group for it, so I have been seeking advice. The only real advice I ever get is that I need to relax more. What the fuck does that mean? First off, HOW do I relax when I'm getting angry and freaked out about the whole thing and it's horrifying me and ther'es poop involved. How in hell do I stop caring and embrace filth and disease? I can't unknown what I know about it. How do I calm down when I'm sleep deprived? Furthermore, what exactly am I relaxing? What does "relax" actually mean? Fall down in a faint and act comatose? Well that'd be completely relaxed, wouldn't it? Somewhere between comatose and hysterical is this magical state of "relax" and nobody ever defines it. It's clearly not the state of emptying your mind and breathing deeply because I do that every time. If I just shove the fucking cone in and stare off into space it does not solve the problem. I just wind up sitting like that until I stop. when I've had success it entailed a lot of wriggling and pulling and pushing and a hand on my belly squeezing and pulling and pushing on the flesh under the skin. A complicated dance of cone, hand, and torso sitting back but not too far back, erect but not too erect, squeezed in with an elbow on the vanity, back pushing the toilet tank lid off the back, head twisted watching the water bag for signs of movement, then looking backdown to see if the flow is coming out or going in, at which point the flow stops again... Oh it's really too much. To think there is never any escape from this, this new reality. Never any hope of ever having a normal bowel movement again. I feel so wretched and miserable. Nobody can rescue me. Nothing can be done to release me from this. Nobody can do anything and the medical community won't even try. All those jackasses have to say is that I need to relax and embrace with joy this life saving solution to my colon cancer.