So last night was literally the worst night of my life. Even worse than the nights when they didn't think I'd live through the night (At least then I had friendly Mr Morphine to keep me company). The day was pretty good, despite some minor 1st degree burns on my legs due to some spilt boiling water. Other than that, it was a pretty good day. Right up until about 8pm.
Many many years ago when I was 22, I got myself an ostomy, which is another way to poo. In case you don't know, a Colostomy is where they take your large intestine and basically pull it through a hole in your stomach and cut a hole in it so now everything that passes through your digestive system comes out that hole and into a back which is attached to a flange which is glued (which means you have to change it regularly) over the hole in your stomach. An Illiostomy (which I have) is where they do the same thing, only with your small intestine. Personally, I think it would be tons easier if they just permanently affixed a flange to your skin somehow, but what do I know.
Now, AISH (Assured Income for the Severely Handicapped), being the cheap bastards that they are never covers enough supplies to last. I get 60 Catheters, about 30 ostomy bags, and 20 flanges for 2 months. Do the math, that's 1 catheter a day. And I usually cath 6-8 times a day which mean I'm constantly re-using catheters. Luckily all the time I spent in the hospital didn't stop me from ordering supplies, so I have a bit of a stockpile of catheters. Ostomy supplies, on the other hand, I've already burned through. The flanges generally last between 4 days to a week (if you're really lucky) and rarely last through a shower. No, some of us aren't in favor of showering only once a week, so I rarely have one last that long. And sometimes they don't even last 3 hours. More than once I've had to change it 3-4 times in 1 day, and if you get a bad box (5 to a box) you're really screwed. So usually after 5-6 weeks out of 8 I have to order some more and pay for them out of my own pocket. And usually, the place I order from (in Edmonton) screws up the order.
So about 2 weeks ago, like usual, I had to order some more. I had 2 or 3 left, so I figured I'd be ok through the weekend and however long (should be less than 2 days) they took to get here. They're supposed to send them through DHL right to the house. DHL is the only game in town, except the post office, which takes up to a week, plus our mail box requires a key, which my dad keeps in his truck, and is about a block away and too small for the package anyway so it would go to the post office, which is downtown and barely accessible. DHL is clear across town and surrounded by gravel, but they're SUPPOSED to bring it right to the house.
It was a Friday when I placed the order. Well, the following Wednesday there was still nothing and I was down to my very last flange. So a quick, desperate search though the various bags and boxes that had come home with my after my various hospital stays found 1 last box! At least I wasn't completely screwed.
Now, fast forward to last night. Still nothing here, and once again down to my absolute very last flange again, and several more desperate searches confirmed this. Well, ok, as long as this doesn't leak, I'm calling tomorrow to find out where the hell these things are.
Then, about 8pm, you guessed it, the damn thing's leaking (Insert Blue Rodeo song here). So I attempt to seal the leak with ostomy paste and some of that clear sticky crap they used the last time I had a wound vac. It sorta worked for a little while. Then started leaking more aggressively, so in desperation I took the used flange and even more of the wound vac stuff and sorta kinda hacked togeter some sort of home made flange, then using LOTS of paste, stuck it on. That actually worked surprisingly well . . . for a while. Then, again, leaking. More paste and desperation, but by midnight it had fallen completely off. So, took 1 of those nifty urinals I . . . "borrowed" from the hopical and placed that in front of my stoma (The piece of intestine that sticks outside the stomach) in hopes that anything that leaked would end up in there. Some of it did, most of it didn't. And now my stoma is bleeding too.
So about 3am, now soaking in blood and liquid feces (90% of the time it's liquid b/c it's on the small intestine and they did the original surgery too far up, then over the course of 14 surgeries 3 feet of intestine was removed a little at a time, meaning nothing digests too well) I finally give up and decide I've no choice but to spent the night in the shower and hopefully be able to get some results in the morning and get ahold of homecare and beg for a flange.
So I gather some assorted supplies I figure I'll need to make it through the night and put my shower chair in the shower, then get in after it. First order of business, rinse off some of the . . . stuff I'm half covered in. That felt good. Then, clean my chair (which was also partially covered). Then, bunker down for a loooong night. Was exhausted by this point, but no way in hell I could get comfortable. So I played some Sudoku on my phone, planned out some things for various projects I've been working on, and mostly just tried to keep my mind off the current shituation. In total, I got maybe 2 hours of sleep in about 10 minute intervals. Veeery tired.
Then at about 7am, my dad comes in to the bathroom, somewhat surprised he asks "What the hell are you doing in there?" and "Have you been there all night?" The answers to these questions were "Going through hell" and "Pretty much." He disappears to search once more through the assorted bags and boxes while I rinse off the last thing I ate once more. Every joint and muscle is veeery sore due to the awkward position I've been in most of the night. Well, apparently good ol' Pa could reach some boxes I couldn't, cus he found 1 last flange. That was the high point of my year. So, I shower off and clean everything good, things in my guts have finally settled down a bit, I made it out alive!
Barely. That's when I notice my penis and testicles are swollen to roughly twice their normal size. Guess being wet and covered in liquid crap most of the night didn't do them any good, or indeed, do any good for any of my skin. So I cath out about a gallon, and am probably brewing a UTI (Urinary Tract Infection) now, luckily I'm still on antibiotics for something else, so I hope that takes care of that. I think I got everything good, and stick the flange on, and . . . SUCCESS! Looks like I made it!
So I gather up my crap and get back in my chair. Leave the bathroom, dad gets in and showers then gets ready to leave. He's got 4 LONG trips to make today, so he's gunna be home late. While he's in the shower I make a call to my grandma to see if she can go by DHL when they finally open and see if that stuff's there. It wasn't, so after a call to the place in Edmonton we find out that apparently they sent it in the mail. So grandma goes to the post office, nope, nothing. And guess what! The new flange is now leaking! Apparently the area around my stoma as well as my nether regions are oozing a clear, somewhat sticky sort of gunk making it difficult for the flange to stay on. So I get on the phone and talk to homecare, and basically beg for a flange. About 20 mins later they show up with 2 flanges. 1 is useless (no bag with it), the other is too damn small. So I make the small one fit and homecare changes the dressings and leaves. More of the wound vac stuff to hopefully help it stick, so far so good, but my guts still oozing gunk, though it's slowed down a bit. My mom called to say she was gunna be coming by tomorrow on her way to Lloydminster (She lives in Edmonton now) so I begged her to pick up some supplies and bring them with her (TBH, I didn't hafta beg too much. Love you mommy!) So now I just gotta last until tomorrow (fingers crossed).
But, I am extremely tied, sore, and irritable so if I'm a little Krass (or Bernie) I apologize in advance.
Many many years ago when I was 22, I got myself an ostomy, which is another way to poo. In case you don't know, a Colostomy is where they take your large intestine and basically pull it through a hole in your stomach and cut a hole in it so now everything that passes through your digestive system comes out that hole and into a back which is attached to a flange which is glued (which means you have to change it regularly) over the hole in your stomach. An Illiostomy (which I have) is where they do the same thing, only with your small intestine. Personally, I think it would be tons easier if they just permanently affixed a flange to your skin somehow, but what do I know.
Now, AISH (Assured Income for the Severely Handicapped), being the cheap bastards that they are never covers enough supplies to last. I get 60 Catheters, about 30 ostomy bags, and 20 flanges for 2 months. Do the math, that's 1 catheter a day. And I usually cath 6-8 times a day which mean I'm constantly re-using catheters. Luckily all the time I spent in the hospital didn't stop me from ordering supplies, so I have a bit of a stockpile of catheters. Ostomy supplies, on the other hand, I've already burned through. The flanges generally last between 4 days to a week (if you're really lucky) and rarely last through a shower. No, some of us aren't in favor of showering only once a week, so I rarely have one last that long. And sometimes they don't even last 3 hours. More than once I've had to change it 3-4 times in 1 day, and if you get a bad box (5 to a box) you're really screwed. So usually after 5-6 weeks out of 8 I have to order some more and pay for them out of my own pocket. And usually, the place I order from (in Edmonton) screws up the order.
So about 2 weeks ago, like usual, I had to order some more. I had 2 or 3 left, so I figured I'd be ok through the weekend and however long (should be less than 2 days) they took to get here. They're supposed to send them through DHL right to the house. DHL is the only game in town, except the post office, which takes up to a week, plus our mail box requires a key, which my dad keeps in his truck, and is about a block away and too small for the package anyway so it would go to the post office, which is downtown and barely accessible. DHL is clear across town and surrounded by gravel, but they're SUPPOSED to bring it right to the house.
It was a Friday when I placed the order. Well, the following Wednesday there was still nothing and I was down to my very last flange. So a quick, desperate search though the various bags and boxes that had come home with my after my various hospital stays found 1 last box! At least I wasn't completely screwed.
Now, fast forward to last night. Still nothing here, and once again down to my absolute very last flange again, and several more desperate searches confirmed this. Well, ok, as long as this doesn't leak, I'm calling tomorrow to find out where the hell these things are.
Then, about 8pm, you guessed it, the damn thing's leaking (Insert Blue Rodeo song here). So I attempt to seal the leak with ostomy paste and some of that clear sticky crap they used the last time I had a wound vac. It sorta worked for a little while. Then started leaking more aggressively, so in desperation I took the used flange and even more of the wound vac stuff and sorta kinda hacked togeter some sort of home made flange, then using LOTS of paste, stuck it on. That actually worked surprisingly well . . . for a while. Then, again, leaking. More paste and desperation, but by midnight it had fallen completely off. So, took 1 of those nifty urinals I . . . "borrowed" from the hopical and placed that in front of my stoma (The piece of intestine that sticks outside the stomach) in hopes that anything that leaked would end up in there. Some of it did, most of it didn't. And now my stoma is bleeding too.
So about 3am, now soaking in blood and liquid feces (90% of the time it's liquid b/c it's on the small intestine and they did the original surgery too far up, then over the course of 14 surgeries 3 feet of intestine was removed a little at a time, meaning nothing digests too well) I finally give up and decide I've no choice but to spent the night in the shower and hopefully be able to get some results in the morning and get ahold of homecare and beg for a flange.
So I gather some assorted supplies I figure I'll need to make it through the night and put my shower chair in the shower, then get in after it. First order of business, rinse off some of the . . . stuff I'm half covered in. That felt good. Then, clean my chair (which was also partially covered). Then, bunker down for a loooong night. Was exhausted by this point, but no way in hell I could get comfortable. So I played some Sudoku on my phone, planned out some things for various projects I've been working on, and mostly just tried to keep my mind off the current shituation. In total, I got maybe 2 hours of sleep in about 10 minute intervals. Veeery tired.
Then at about 7am, my dad comes in to the bathroom, somewhat surprised he asks "What the hell are you doing in there?" and "Have you been there all night?" The answers to these questions were "Going through hell" and "Pretty much." He disappears to search once more through the assorted bags and boxes while I rinse off the last thing I ate once more. Every joint and muscle is veeery sore due to the awkward position I've been in most of the night. Well, apparently good ol' Pa could reach some boxes I couldn't, cus he found 1 last flange. That was the high point of my year. So, I shower off and clean everything good, things in my guts have finally settled down a bit, I made it out alive!
Barely. That's when I notice my penis and testicles are swollen to roughly twice their normal size. Guess being wet and covered in liquid crap most of the night didn't do them any good, or indeed, do any good for any of my skin. So I cath out about a gallon, and am probably brewing a UTI (Urinary Tract Infection) now, luckily I'm still on antibiotics for something else, so I hope that takes care of that. I think I got everything good, and stick the flange on, and . . . SUCCESS! Looks like I made it!
So I gather up my crap and get back in my chair. Leave the bathroom, dad gets in and showers then gets ready to leave. He's got 4 LONG trips to make today, so he's gunna be home late. While he's in the shower I make a call to my grandma to see if she can go by DHL when they finally open and see if that stuff's there. It wasn't, so after a call to the place in Edmonton we find out that apparently they sent it in the mail. So grandma goes to the post office, nope, nothing. And guess what! The new flange is now leaking! Apparently the area around my stoma as well as my nether regions are oozing a clear, somewhat sticky sort of gunk making it difficult for the flange to stay on. So I get on the phone and talk to homecare, and basically beg for a flange. About 20 mins later they show up with 2 flanges. 1 is useless (no bag with it), the other is too damn small. So I make the small one fit and homecare changes the dressings and leaves. More of the wound vac stuff to hopefully help it stick, so far so good, but my guts still oozing gunk, though it's slowed down a bit. My mom called to say she was gunna be coming by tomorrow on her way to Lloydminster (She lives in Edmonton now) so I begged her to pick up some supplies and bring them with her (TBH, I didn't hafta beg too much. Love you mommy!) So now I just gotta last until tomorrow (fingers crossed).
But, I am extremely tied, sore, and irritable so if I'm a little Krass (or Bernie) I apologize in advance.
:-) you're never alone...even in the shower :-)
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