4:57 in the morning and it burns. Burns like hell! And this keeps happening. Not all the time, but often enough. Often enough to prevent sleeping soundly through the night. Often enough to interfere with just about everything. But everyone's got problems. That's why we are all here. No, not on this planet, necessarily, but on this website. A place where we attain help in a variety of ways. Or, if not help, a sense of belonging.
I pushed the help button. Twisting to my right was uncomfortable, then again, everything is uncomfortable when you have an opening that feels as though it's on fire. Yes, my stoma. Hot raw bile pouring out across already tender skin. How does somebody stop this? How do I stop this from happening?
I know there's nothing anybody can do. Nobody is well-versed in this. It's a matter of fact, nobody is versed at all… much like this illness we share. So I work on solutions by myself. And in this instance, it's finding some way to immediately relieve the pain. It really hurts. This time.
First, I grab my old cell phone and turn on its flashlight, affixing it to the cell phone holder above my head. Then I start peeling off the 4 by 4 bandage. Two layers. Any agitation makes things worse. But this is something I must do. It's the same thing I did about two hours ago, and also, four out of the past five nights. But on the fourth night, there was sleep!
I was in this bad cycle about two months ago. Nine consecutive days and nights of this. And I was getting ready to do bad things, violent things, against inanimate objects. But I held on, I held tight. That's when one of the registry nurses found some stoma adhesive powder in the basement. The miracle cure! At least, temporarily. Until now.
There's always something. I'm almost out of the powder anyway. And the nurses don't know if they can order it for me again. Because… well fuck it, I don't want to get into that kind of shit right now. I'm in pain.
The first layer of bandage is dry. Which means, nothing. Second layer? Well, there is no second layer this time. I am using something called Optifoam. It's super absorbent. It's made out of polyurethane. Nurse Raleigh found some of it in the basement five days ago. And it was helping. It has helped. I think. Some of the time. Right now it's not.
It turns out bile isn't the problem, not necessarily. For whatever reason, my feeding tube is pushing in and out in rapid succession. Perhaps a sudden peristalsis event is to blame. But it seems the pain originates when it's pushing out, and pushing bile out along the edges and around the circle/rim. That seems to be the problem. So I re-secure the stoma, pinning it underneath a plastic spoon, plus two mouth moisturizer swabs taped together. Cotton tipped applicators are difficult to come by here, so I've had to improvise. Tape? Well, that's a difficult thing, too. And the most difficult thing of all? The plastic blue cap, the kind that secures to blood draw vials. I have one of those, only one of those, as an emergency means to plug my feeding tube whenever it's not in use. If not for that, I'd have to use my thumb. Literally. I'd have to put my thumb over the opening and just hold it there until… whenever. Infinity. A time frame in between those two.
Note: the normal attached means of capping my feeding tube broke off about six weeks ago
After more than 30 days, I finally did get the tape yesterday. Paper Tape. 2 inch. McKesson. A brand that sticks. Literally. And they also received some cotton tipped applicators. At long last.
This CNA finally showed up. I only had to wait 12 minutes, which isn't too bad, but when things are going wrong, help is needed right away.
I asked for towels and warm water. The goal was to pour the warm water over the wound area to rinse away the bile. But as time passes, I realize the bile isn't necessarily the primary problem. The pain is now subsiding. But I ask for those supplies anyway, in case something happens sometime in the immediate future.
Anyway, the sun is coming up, and I'm laying here just kind of not moving a whole bunch. And I'm talking into my phone, reporting this information to you and for your knowledge. Not exciting stuff, not at all. But I figure, since I can't sleep, I might as well be talking into my phone.
It's 5:19 a.m. now. And the pain is gone. Hooray for me. And hooray for you, because you don't have to read about my stupid pain event any longer, and perhaps not anytime soon.
And really I'm not looking for sympathy or empathy or whatever the proper term would be, I'm just describing what's been going on, based upon what's going on right now. Everybody has pain. Everybody's damaged or injured or something. I'm not looking for help. I get to visit with my neurogastroenterologist in August. I was scheduled for the end of July, but they just pushed my appointment back yesterday. My guy was going to be in surgery, so they had to rearrange me.
But again, there's nothing any of these doctors can do. Not for this problem. Not normal doctors. Perhaps a superhero doctor, but do any of those really exist?
Eh, this problem ain't never gonna crop up again. Or it may crop up again in two hours. Or in two weeks. I never know. Nobody ever knows. That's how problems work. They don't ask for permission.
I'm going to try to go back to sleep, before they wake me up an hour from now. And then after they wake me up I'm going to try to go outside and get my 20 minutes of direct sunlight. It's only going to be 99 degrees today. Although humidity is way the heck up. 30% chance of precipitation. Very unseasonable. I love it!
I've also been working on music, a little bit here and a little bit there. I have one song in the making. I think it's a song. It sounds like a song. So at least that's heading in a direction of some kind. I'm happy that I'm able to do this now. Make music. Again.
Overall I am mostly okay. It's just that the trouble I have sleeping bleeds into the daylight. Which bleeds into the next day, and the days succeeding. And with this illness, and without sleep… eh, I'll stop complaining.
Take care… and I'm sure I'll be back to write again soon.
Howard
PS - I just wrote this off the top of my head in real time so maybe this makes sense, maybe it doesn't.
My Set-up (in Technicolor Surround Unsound) - llllonnng story
I pushed the help button. Twisting to my right was uncomfortable, then again, everything is uncomfortable when you have an opening that feels as though it's on fire. Yes, my stoma. Hot raw bile pouring out across already tender skin. How does somebody stop this? How do I stop this from happening?
I know there's nothing anybody can do. Nobody is well-versed in this. It's a matter of fact, nobody is versed at all… much like this illness we share. So I work on solutions by myself. And in this instance, it's finding some way to immediately relieve the pain. It really hurts. This time.
First, I grab my old cell phone and turn on its flashlight, affixing it to the cell phone holder above my head. Then I start peeling off the 4 by 4 bandage. Two layers. Any agitation makes things worse. But this is something I must do. It's the same thing I did about two hours ago, and also, four out of the past five nights. But on the fourth night, there was sleep!
I was in this bad cycle about two months ago. Nine consecutive days and nights of this. And I was getting ready to do bad things, violent things, against inanimate objects. But I held on, I held tight. That's when one of the registry nurses found some stoma adhesive powder in the basement. The miracle cure! At least, temporarily. Until now.
There's always something. I'm almost out of the powder anyway. And the nurses don't know if they can order it for me again. Because… well fuck it, I don't want to get into that kind of shit right now. I'm in pain.
The first layer of bandage is dry. Which means, nothing. Second layer? Well, there is no second layer this time. I am using something called Optifoam. It's super absorbent. It's made out of polyurethane. Nurse Raleigh found some of it in the basement five days ago. And it was helping. It has helped. I think. Some of the time. Right now it's not.
It turns out bile isn't the problem, not necessarily. For whatever reason, my feeding tube is pushing in and out in rapid succession. Perhaps a sudden peristalsis event is to blame. But it seems the pain originates when it's pushing out, and pushing bile out along the edges and around the circle/rim. That seems to be the problem. So I re-secure the stoma, pinning it underneath a plastic spoon, plus two mouth moisturizer swabs taped together. Cotton tipped applicators are difficult to come by here, so I've had to improvise. Tape? Well, that's a difficult thing, too. And the most difficult thing of all? The plastic blue cap, the kind that secures to blood draw vials. I have one of those, only one of those, as an emergency means to plug my feeding tube whenever it's not in use. If not for that, I'd have to use my thumb. Literally. I'd have to put my thumb over the opening and just hold it there until… whenever. Infinity. A time frame in between those two.
Note: the normal attached means of capping my feeding tube broke off about six weeks ago
After more than 30 days, I finally did get the tape yesterday. Paper Tape. 2 inch. McKesson. A brand that sticks. Literally. And they also received some cotton tipped applicators. At long last.
This CNA finally showed up. I only had to wait 12 minutes, which isn't too bad, but when things are going wrong, help is needed right away.
I asked for towels and warm water. The goal was to pour the warm water over the wound area to rinse away the bile. But as time passes, I realize the bile isn't necessarily the primary problem. The pain is now subsiding. But I ask for those supplies anyway, in case something happens sometime in the immediate future.
Anyway, the sun is coming up, and I'm laying here just kind of not moving a whole bunch. And I'm talking into my phone, reporting this information to you and for your knowledge. Not exciting stuff, not at all. But I figure, since I can't sleep, I might as well be talking into my phone.
It's 5:19 a.m. now. And the pain is gone. Hooray for me. And hooray for you, because you don't have to read about my stupid pain event any longer, and perhaps not anytime soon.
And really I'm not looking for sympathy or empathy or whatever the proper term would be, I'm just describing what's been going on, based upon what's going on right now. Everybody has pain. Everybody's damaged or injured or something. I'm not looking for help. I get to visit with my neurogastroenterologist in August. I was scheduled for the end of July, but they just pushed my appointment back yesterday. My guy was going to be in surgery, so they had to rearrange me.
But again, there's nothing any of these doctors can do. Not for this problem. Not normal doctors. Perhaps a superhero doctor, but do any of those really exist?
Eh, this problem ain't never gonna crop up again. Or it may crop up again in two hours. Or in two weeks. I never know. Nobody ever knows. That's how problems work. They don't ask for permission.
I'm going to try to go back to sleep, before they wake me up an hour from now. And then after they wake me up I'm going to try to go outside and get my 20 minutes of direct sunlight. It's only going to be 99 degrees today. Although humidity is way the heck up. 30% chance of precipitation. Very unseasonable. I love it!
I've also been working on music, a little bit here and a little bit there. I have one song in the making. I think it's a song. It sounds like a song. So at least that's heading in a direction of some kind. I'm happy that I'm able to do this now. Make music. Again.
Overall I am mostly okay. It's just that the trouble I have sleeping bleeds into the daylight. Which bleeds into the next day, and the days succeeding. And with this illness, and without sleep… eh, I'll stop complaining.
Take care… and I'm sure I'll be back to write again soon.
Howard
PS - I just wrote this off the top of my head in real time so maybe this makes sense, maybe it doesn't.
My Set-up (in Technicolor Surround Unsound) - llllonnng story