If you get grossed out by poop/intestine, this blog/whole page isn't really for you.
So I'm getting dressed after playing drums and I'm about to be on my way out the door. As I'm changing I notice that my whole shitbag setup has sprung a leak and some shit has seeped from underneath the wafer onto the sticker surrounding it.
Not really the greatest pic, I'm still getting used to that camera. But hey, you see brown stuff right?...so you know something went wrong.
In the hospital the ileostomy nurse and doctor both said to change my bag about every 3 days. The bag clips onto to a wafer which is glued onto your skin. They said to change the wafer about every 7-10 days...but the best rule of thumb is: every 7-10 days, or until you realize you are covered in shit. Today was the longest run I had with a wafer, I think I was on day 8. It's hard for these things to stick on especially when/if you shower (cover the sticker with tape! blowdry after! but not too much, I melted a bag once while it was on me, and boiled my shit) or if you move around a lot.
So I took a bunch of pics today as I was changing all my stuff to try and explain how to change an ileostomy bag and wafer. First thing to do is to peel your wafer and everything off and throw it in the garbage. As you're peeling the wafer off hold your skin down, it helps. I didn't take a picture of me doing this because a) I had poop hands, b) I didn't really think to take pics for this yet and my camera was not charged. Before you pull everything off though, I would get all of the supplies you need to change the wafer ready, that way once you come out of the shower you can get right to work.
From left to right: toilet paper, anti sting barrier, adhesive remover, wafer adhesive, wafer, pen, bottle of brown stuff (benzoin compound), stoma measure, scissors.
OH! Make sure you have one of those small hospital blanket things so you dont get your bed dirty. Also I forgot to include one of the most important tools when it comes to having an ileostomy bag. If you don't know what it is you'll figure it out.
and here's the stoma uncovered...
Okay...to clear up some things:
1. Yes, that is my small intestine pulled through my skin with the outer edges folded outward and sewn down to my body. Also known as a stoma. It doesn't hurt if you touch it.
2. Yes, poop and farts come out of there. The farts kind of hiss sometimes.
3. Yes, it kind of does look like a dogs boner. (credit: James Haidacher)
The most important thing is to make sure you're relaxed whenever you get some leakage. Having poop on you is worse when you're freaking out about it. Although I was always worried since my exposed innards were about four centimeters away from my fecal spout, but hopefully when you get this surgery that's not an issue.
Once everything is off of you, you should probably shower. If you don't you're a fucking weirdo. One thing you can do before you shower is to wipe down the area with adhesive remover and start scraping off all the glue from the wafer that just came off.
Okay as you get out of the shower,keep the roll of toilet paper handy, because that thing shits without your control. They had me using gauze in the hospital, but you have to open those up individually and I feel like I'm always wasting them because I use a lot to keep everything clean. But if you use gauze and fold it up and put it on over your stoma it will absorb a lot and you can do work without having to keep stopping to clean up poop.
A good idea would be to review on how to change your bag a lot before you actually do it, that way you can do everything really quick and won't get a lot of poop on yourself. Another good idea is to not spend a shitload time taking a bunch of pictures for your internet blog.
The best time to really change this is in the morning , because most of the food you ate will already be out and you won't have a constant stream of poop or poop water coming out.
Okay so now I would get in bed, with all of my tools next to me and get to work. But first make sure something good is on tv to help pass for later when you need to wait. Your best bet is probably TBS. Seriously everything on that channel rules pretty much.
Next thing you can do is rub the anti sting barrier around the area. This is so your skin doesn't get irrateted from shit and blood sitting on it around the area. I also put benzoin compound on the area too, it also protects the skin, but it also burns a bunch when you put it on. Like serious writhing in pain and rolling around burning.
Now you need to measure your stoma to cut a hole in your wafer. You need to meaure it the first few weeks of having it out because it shrinks over time. I've kinda leveled out at around an inch and 1/8 but it was prob almost 2 inches at first. After that you trace your stoma size onto the back of a wafer with a pen, and cut the hole. The cut doesnt have to be perfectly round (I have the craft skill of an 6 year old)...but you want a tight fit when you put the wafer over your stoma, because if you have a lot of space between your stoma and the wafer then poop will just sit on your skin for days, and that burns and itches a lot. Then you have to get this powder to put on everything and then it burns next time you change it a lot too.
After you cut a hole in the wafer, peel the white sticky paper on the back of it off and put some "Stomahesive" on it. I was having problems with my wafer sticking until I used it. Let the adhesive dry and air out for a few minutes, then smack that sucker down over your stoma.
Delicious! Once this is down you should push down on it for a few minutes. Keep in mind that if you use benzoin, this will push into your skin and will fucking burn again. But by now it's no big, I mean if you already got a shitload of intestine cut out of you, nothing really seems like that big of a deal anymore. As you can see in one of the pictures above, there is also a white sticker on the paper around the wafer, so you should peel that off and stick that down on you too.
Keep pushing down and then grab a bag and clip it down to the wafer. I usually forget to grab my bag and this step usually involes me getting up from my bed to get one. A very important thing to remember is that you should CLOSE YOUR BAG BEFORE YOU PUT IT ON. Or at least as soon as you do. I ruined a good pair of shoes doing this. (Note: If you know me, you know I didn't really "ruin" these shoes in my standards of the word, being that they are still totally functional shoes. You probably even can guess that I haven't even cleaned them that well, and I probably bragged about having dirty shoelaces to you and showed them off like some sweet trophy.)
Clip the bag down and then put pressure all around the clip by pressing down in one spot then moving clockwise or counterclockwise. Most doctor's (including mine) will tell you to put the bag vertical and tuck it into your pants. There's different companies that make different bags so some are easier than others...and most people will just wear looser clothes. But I am kinda stubborn, and I hate buying new clothes...so put mine on horizaontally and use my ostomy belt.
As you're putting pressure around the clip you should hear some "clicks" which is the clip snapping on. This is important because the bag needs to be completely snapped on. Shit, every step is important, or else we'd skip it. Okay so you're done now! Finish up Raymond or whatever's on TV, and stand up and go back to doing whatever you would be doing.
That's really all there is to it. The whole process can take anywhere between 10-30 minutes depending on how slow you are. Trying to take good pictures with good focus will make the process take about an hour and a half. I'll admit that I still make mistakes when changing my bag. Ironically, in this " how-to session", after I put my wafer down and sticky paper down, some poop leaked and I had to do everything again. I also didn't completely clip my bag down and I went out and came home later with some poop underneath my belt.
I think I was just too distracted with my camera, plus a really good episode of Seinfeld came on.
That's all for now. I started a new medicine today after a week's worth of hesitancy. It's called 6-mp, it lowers your immunity and white blood cells. I just have to get bloodwork every week for a month then every month then every three months. There's also a cancer warning on it which made me not take it for a week even though we had the prescription. But there are cancer warnings on EVERYTHING, and it's supposed to work really well with Crohn's. I read that it works especially well with people who had a hard time getting off of the steroid prednisone, or with people who weren't responding to prednisone in a flare up. Both of which I had a problem with. And most of the medical complications were in the 2-3 percent range. Plus it's only a pill a day! Just like birth control!
A pill a day isn't that bad...who the fuck would want to use one of those vaginal rings anyway.