Wednesday, May 13, 2009

tests.

I've been to at least 6 different doctors to try to figure out my Crohn's disease situation. Most of the time I change doctors because my parents don't like the doctor or what they are saying, or because I'm feeling, but honestly most of the time I am feeling worse because I tend to eat whatever I want which is a bad idea. Being that I am 18 and trying to do things, going to so many different doctors is not fucking cool. But what tends to be worse is the various tests that have been given to me over the past year and a half. A lot of them were very similar, a lot of them were very pointless, and all of them pretty much were very silly. I understand that over time your Crohn's Disease can progress or get worse and it's good to check up on it, but some of these tests def did not need to happen.

I don't ever know what this first one ever given to me was called. All I know is that I had to drink a lot of barium. "Oh you mean barium? Li
ke the fucking element?" Yes. White gooey drink that tasted like Sunny D, only it was white and tasted a little worse. So after drinking about like 2 bottles of barium for this test, I think one might have even been the night before, they put me on the table and try to get x-rays of me. But then this usually happens whenever I have to drink barium for tests: "Lol you need to drink more barium, you intestines are like swollen and enough of it hasn't gone through". The first time this happened I drank more barium and still no good so they were like "go get food or something" so I did. I must have taken at least seven tests involving barium or drinking bullshit for catscans, and at least 4 of the times I probably had to drink more.

Eventually for this first test enough barium goes through an
d I'm good to go and this guy is holding a stick with like a bouncy ball on the end and pressing down on my stomach. "Tell me where it hurts". And he's like looking at my insides and trying to figure out what the problem is. I don't remember if they found anything out during this test. I don' t really remember this test well at all, all I really remember is that it was the first time I was introduced to my new favorite drink, barium smoothie coolata.

Another test I took was a colonoscopy, I think I probably describe
d it before, but I'll give a quick run through. Don't eat for x amount of hours prior to the test (this is actualy the case for most stomach, but tests for obvious reasons), take 2 enemas at x and y hours prior to the test (luckily i had practiced giving myself an enema before I even had crohn's for no reason at all), come in to the hospital, iv anestetic, sleep, long camera on a bendy wire in your butt, wake up, fart little air poofs, go home. No big deal, I probably have to get one every few years or something, probably the easiest procedure for me to go through, all I do is sleep. They actually printed me out some pictures from this test, but my mom took them away from me because I kept showing my friends because I am a whore. If I do get them I will put them up for sure!

Another test I took was a mother fucker for sure. capsule endoscopy I think it's called. Here's what happened, they make you not eat for like a day, and probably you have to give y
ourself an enema because you usually have to, and why not? Then you go into the hospital very hungry and they put all these sticky things on your chest that are connected to wires, and all of these wires are connected to what looks like an overly sized beeper which goes on a belt which is strapped around you. Then you swallow a pill with a camera built into it that keeps flashing. The pill isn't really THAT big. I did choke a little because I was just eager to swallow it and I mostly just choked on the cup of water they make you drink to chase it down after, wrong pipe or something. When they first took the pill out of the package it was in this large protective cone thing and I remember seeing it and being like "WHAT THE FUCK" because I though I had to swallow a 4 by 2 inch orange cone. Here is a picture of the actual pill next to a coin that is a shitty reference of size because I have no idea what the fuck kind of coin it is.
Haha but seriously, it couldn't have been longer than two inches.

Once you swallow the pillit runs through your whole digestive tract and sends pictures to the sticky things on your chest which then store the pictures in that large battery thing. You have to wear like a large apparatus over you which looks like a bomb is strapped to you. I actually had a note in school so people didn't ask questions, but I just wore a large hoodie all day anyway.
You go back at the end of the 2nd day (halfway through the second day I think you can start eating jello or something) and then they rip all the sticky things off of your hairy 17 year old chest and you go home and shit out the pill, which I never found haha.

Here is why this test was fucking stupid to do at the time. I understand it was a new doctor and he wanted to see what was going on, but a few weeks later I received a phone call and got the results.

"Hi is this Joseph? Hi this is ____ from Dr. ____'s office, we're just calling to follow up your endoscopic capsule procedure. Turns out you DO have Crohn's disease. Yep! It's confir
med!"

You fucking mother fucker. I'm pretty sure we know that when I had a a grapefruit sized abcess in my butt, and then we went in with a camera and took pictures and we found ulcers and inflammation. I don't understand why they thought they would find something if they went in from my mouth instead of my butt. That was so fucking stupid, fucking dick head.


Does anyone know what a holistic doctor is? I went in and this guy tells me to lay down. Everything seems normal until he tells me to put my arm up and pushes it down and tells me to resist him pushing it down. Then he holds capsules of different foods to my head and tells me to resist and notes that for some foods I have a harder time resisting. Honestly, I don't know if this is real or a scam, this guy kinda creeped me out and we never gave him a chance, plus our insurance at the time didn't cover it and the first (and also last) visit was like $250. We kinda blew it off as "wtf was that hippie shit" at the time, only because we were in there for like two hours and this guy seemed so into holding samples of lobster on my head. A lot of people swear by holistic doctors so I guess it could have been worth a shot, but one of the first things he said to me was "your diet needs to completely change". He recommended all gluten free foods. I remember gluten free bread tasted like 30 day old corn bread only like very bland and that peanut butter was very watery. I probably could have gotten used to it, but we just never went back to see this guy anyway so I stopped. I will note that Crohn's probably has to do something with food allergies or some kind of reactio
n to food. And if you're a doctor reading this right now and you disagree: fuck you, and come see me.

Sorry, writing all this is making me realize how much I fucking hate some doctors haha.

Anyway, easiest test I've ever done is the x-ray where I just drink a cup of fizz and stand there and they take it, both of those were done to me in the hospital both times. I've also been administered the "gay test" by friends, where they would put their arms around me and time the seconds that I would allow it to happen. Turns out that x seconds is equivalent to x% of how gay I am, usually somewhere in the 200's.

Probably the most frequent test I've taken though is the catscan, lots of barium to drink, then you lay down and they put you through a tube and it makes crazy noises. Sometimes they give you IV iodine too which makes your gooch tingle a lot for some reason. These catscans were
done in the hospital a few times, and a lot of times doctors wanted to do them to see how I'm doing. I don't know why they just didn't share results I'm sure a lot of them were not necessary haha. However this picture does conclude one fact that I know is true about my body:




...And that is that my limp dick tends to hang to the left when I am laying down. ZING.

Saturday, May 9, 2009

rockin out

So like I was saying, having an ileostomy bag is only as limiting as you let it be. I mean you can really do anything, but sometimes it will cause you to get shit all over yourself underneath your shirt. Recently my bags and sticker have been lasting for about 4 days, but I think instead of blaming that on the company, it's more been that I've been going to shows and playing drums and jumping around on people and stuff.

I played a show in Philly the other day, about a little over an hour away f
rom home. This set was hot and sweaty as most of them are, but I recall saying into the mic in between songs :

"The only thing worse than playing in this heat is playing in this heat with a bag of shit strapped to your body."

It was pretty hot and I was pretty sweaty. After our set I stood up and was wondering why I was sweating in such an awkward pattern on my shirt. I stood up and realized that this swea
t did not really smell like your regular sweat, I lifted my shirt and found shit smeared all over my stomach like you would only see on some exclusive websites. So of course I do what any musician covered in shit after a performance would do, I put it off to the side and packed up all of my drums and loaded them into a car. Out in the back in the trunk we found a shitty band's t-shirt. So I took off my moist shirt and put theirs on. I went into the bathroom and wiped myself down with a bunch of paper towels and then stuffed some toilet paper underneath my ostomy belt.


You can see the wet poop stains on the belt in that picture. It seeped through the belt and onto my shirt.

After I stuffed my belt and put a shirt on a put a hoodie on so I didn't look l
ike I had a huge bulge underneath my shirt. I still had some wet poop on me and it was still leaking...once the wafer is off and poop has come out from underneath it's pretty hard to get it to stick since there is still poop on your skin. Of course, the longer shit would be on me the more irritated my skin would get. So I did what any avid music listener at a show covered in shit would do...I stayed for the 2 bands I wanted to see and then we left...there were only 3 left, but we don't really like the last band anyway so whatever.

We said bye to our friends from out of state and left for home. On the way home we stopped at Burger King, well because we were hungry. Eating food with a leaking ostomy bag isn't really the greatest idea, but it takes a few hours for everything to go through anyway. So we ate in the burger king and then got home like fifteen minutes later. So this was probably a total of two and a half hours of being se
mi-covered in shit. I got home, went into the bathroom and took a pic.



I threw my belt in the sink and soaked it in water, ripped whatever was still sticking on my bag and wafer off, put it in a plastic bag, and jumped in the shower. I stayed in the shower for a while, because I like taking long showers, especially because I don't really shower every day anymore. Then I went into my bed and started changing my stuff, which burned more than usual because I irritated a lot of skin. If you look right between my stoma and my hand youll see a lot of puffy irritated red skin. It itched a lot, and of course applying anything that contained alcohol onto it fucking burned so bad. I think I actually took this picture before I jumped in the shower which explains why there's still shit on around the base of my stoma.

Whatever, even if it's a fucking awful burning pain, it goes away in like 5 minutes. Temporary awful stinging pain seems to not be as bad when you realize it will be gone eventually, even though during those five minutes I was probably saying "fuck " a lot and punching my wall hard.

I go out for a little after and try to find somewhere smoke weed. Call it my vice, call me weak or dependent, I could really care less. Eat/drink my shit. I could certainly go through this all without smoking, but why should I? I'd rather go through it a little more relaxed and hungrier.

Anyway, we actually end up NOT smoking that night, and I just got to hang out with my friends a little which is just as good of a pick-me up.

Fast forward a few days and we are playing another show with out of state friends (myspace.com/abillionernies and www.myspace.com/wearetheunion. also che
ck out communityrecords.org, awesome people, and i'm in a tour video explaining the bag!). Fun show, someone yelled at me for taking a shit in the girls bathroom, but I was very full and the boys bathroom was occupied, plus I made sure no girls were in there and had someone guard the door. I tried to be extra careful at this show because I didn't want to get shit on me, but it was really no help. After we played I packed and checked and the bottom corner of my wafer had lifted off of me a little. Whatever, I stuff myself with some more toilet paper, stay for the last two bands, go home, shower, change my stuff (in a record time of like fifteen minutes) and go out to grease trucks with my friends. Here's a pic of right before I change my stuff. Def not as bad as the time before, you can't really see the leaking from the bottom corner, but you can obviously see it got on the toilet paper haha. Notice how well I hide my dick in this picture, because I think I am completely naked. That took a few takes haha.


We ended up parking by the infamous house and are still in awe about how well that shit has stuck to the door and paneling of this house. One day there will be repurcussions for that I am sure, but until then, and even once that happens, that shit was still fucking awesome.

I went to a show last night in Long Island and saw our friends in The Tomahawk Chop play an awesome show. They just put out an awesome EP that I have been listening to on a loop the whole time I've been writing this. So if you're reading this you should probably listen to them (www.myspace.com/thetomahawkchop) and thank them for making awesome music because it made me stop being lazy and write this post.

Can't wait to do some weekend touring and be stuck in Georgia covered in shit! Jk, I'm probably gonna bring some extra supplies with me haha.