Thursday, April 23, 2009

vent/thoughts.

fuck you convatec. you make shitty supplies that fall off anytime I try to do anything. A few days I went to the park to play some kickball with my friends. I'm not the most athletic person so I'm not even running that fast and I feel poop water seeping out under my wafer. Oh and thanks for sending the wrongs supplies 15 fucking times. And why the fuck would you make ostomy bags clear. Do you think anyone wants to look at shit. Really. I hope I meet your president one day so I can cover him in my leaky shit.

I was having such good runs with my wafers sticking to my body. Like 7-9 days on average. The past few times have only been like 4-6. The only thing I changed really is that I've been trying to shower every day. I guess that idea is out of the window...whatever in Europe it's like once a week anyway.

I get home and go in the shower, I conveniently ate buffalo wings 2 hours prior so I am spewing shit water out of my stoma with like 12 inch trajectory. Changing my bag was awesome. Spewing shit and chewed up chicken bits on my own chest is awesome. I took a sick picture on my phone of my stoma covered in chicken bits and shitwater but I just accidentally deleted it. Cool. This situation did give me a pretty sweet idea though that hopefully I'll be able to elaborate more on soon.

Oh man I just remembered something that happened when I was in the hospital.

So a representative from convatec came in to get our order for the bags and everything. I had already had the bag for a few days, we were just ordering for when I got home. She said something about changing the bag every day (which there is no need to do at all, I do every 3 usually, sometimes 2 or 4 even. but then it starts to smell after too long kinda.) We had already been visited by other nurses who said you should change the bag around every 2 or 3 days. My mom asked the lady, something like "I thought people changed it every few days, not every day." I swear this is what the lady replied:

"Yeah...if you don't have health insurance. Hah!."

Are you fucking serious. I should have punched you in the mouth. How is that funny. I fucking hate some people, and some companies.

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Doctors are really important with Crohn's disease, because if you have a shitty one you can end up really fucked, and Crohn's disease IS treatable and can be maintained. I really believe anyone that has it can get it under control it just might take some time.

One of my doctor's had the same mannerisms as the genie from aladdin. Really nice guy. A little...flamboyant? One of the first times I saw him he went to go stick his finger in my butt. Not like he was into me, like a medical procedure checking for like abcesses or swelling or anything, not my prostate. My mom just left the room, I'm still trying to like get a read of this guy. All of a sudden he saws those eight magic words:

"Now let's take a look at that fanny".



Whatever, at least he's cool about it. I'd rather have that than some straight ass man that'd be like "Okay, now we are going to take a look at your rectum". Fanny is way easier to digest, and sounds so much cuter!

One of his associates is a dickhead though. Fuck you sir.

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One of my other doctor's on my last visit told me he has an 80 year old patient who is looking at the possibility of getting a colostomy bag, which is like the same thing as an ileostomy bag, only more towards the end of your digestive tract. She possibly has colon cancer and if she does the only way to cure it is to take her colon out and get the bag.

She told her doctors that if they open her up and the only way to cure her is to give her a colostomy bag, she wants to be closed up and not touched.

Really? I think fucking being eaten away at by colon cancer is a million times worse than a colostomy bag. I understand she's old and might be okay with facing death or whatever, and the surgery might bang her up a little more than it did to me at first. But you get so used to it. I actually just compiled of list of things you aren't able to do once you have a colostomy/ileostomy bag:

1. Poop.

I'll add more to it if anything else comes to mind. But I'm pretty sure that's it. And you still even do poop every few days!

Idk, fortunately after two days of having this thing I was over it. And a lot of the reason was because I felt like shit and my shit smelt so bad and I was in the hospital and burping up a lot of shit. Unfortunately, since I don't really have to go through the "emotional stress" of an ileostomy bag, writing about it is a little harder. I could have so many heart to hearts about the struggle, but I really don't feel that way. Instead I'm really just a whore about it and I shit on things. Not saying no one has the right to be upset with this thing, people deal with this differently. Also I can imagine it being a lot harder for girls, since it's harder to feel "pretty" with a poop bag.

I actually looked in the mirror the other day with my favorite pair of boxers on (which I'm still wearing, ew) and felt great. I'm back at 150 pounds even. I'm so used to this thing I almost went out to get the mail in just my boxers, but I felt like it was rude just to have shit hanging off of me. Well actually I didn't feel like it was rude, but I felt like other people might feel like it was rude. Whatever, fuck those people anyway.

But seriously, I'm back to doing everything I can do. Which really only consists of playing drums and hanging out anyway. But I'm sure you can even get back into athletics and stuff if you really want to! Just don't get bags from convatec, what a shitty fucking company.

Sunday, April 19, 2009

shit n' run

video

Alright, there's a lot of questions that can be asked about this piece of art I like to call "shit n' run".

"Why the fuck would you do that?" is probably the most common question.
Are you angry at these people? Is it a metaphor? Is it to raise crohn's/ileostomy awareness? No. It is because I am 18 and it was fucking awesome as hell doing it. There's no justifying it really haha. For some reason the usual guilt i feel after doing something mean has not set in yet, I don't think it ever wil due to the hilarity of this video. There def was (and still is) a risk of me getting my ass kicked or in trouble somehow, but regardless this one of the funnest nights with friends chillin I've had in a while.


We actually did two houses but the first one had bad footage. So after grease trucks and a failed attempt I had to go down two cheeseburgers at McDonalds. Totally worth it. After almost puking them up I held them down and me and my friends sat in the parking lot for an hour and just hung out and talked.

One friend brought something up about how I can only get a blum
pkin for the next few months and I thought it was the funniest thing ever.

On the way to the second house, I said "dude if there is a higher power that planned me having this disease, he had no idea what he was getting himself into." But then another friend said "nah he knew exactly what he was getting into. you're the perfect candidate." This is way more optimistic so I will go with that one.

Ironically, the one thing that embarasses me the most in this video is how big my nose appears to be. I hope it's really not that big in real life haha. The camera adds a few inches.

If anyone else with an ileostomy bag would like to attemp
t this here are some tips:

a) chew your food, but not too much. that's how you get all those nice chunks in there!
b) BRING WIPES WITH YOU AND WEAR PANTS YOU DON'T LIKE. Totally got shit all over my favorite black pants.


Me and a friend of course returned to the scene of the crime today:


Note the bottle of bleach outside. Looks like they were having a hard time scrubbing this stuff off.


If anyone in my family/from this house sees this I am so fucked.

Friday, April 17, 2009

the kicker.

THIS WILL PROBABLY GET GROSS. ADULTS SERIOUSLY I WOULDNT READ THIS.

Okay, so I've talked about my Crohn's and how it has affected my life and the pain in my stomach, the mental exhaustion, and the pain in my butt. What else is there to talk about? Oh, my balls.

So a few days before I was admitted to the hospital for surgery, I noticed a strong pressured pain that seemed to be in my pelvic area and felt a lot of weird pressure in my privates area. I just brushed it off as pain from pooping being really strong. The day I was admitted to the hospital, I still kept feeling this pain so I told the doctor and we did an ultrasound on my privates. One handful of warm jelly and five awkard minutes with a cute latino lady later, she concluded that I was fine and there seemed to be no problem.


Eventually the pain subsided until a few weeks later. To be more precise, probably a few days after being released from the hospital.

Okay so, I wasn't miserable at this point in time, but with such serious wound and still getting used to having a poop bag on you, there is not much you can enjoy. So I did what any 18 year old boy confined to many weeks of bed rest would do. You would think that the huge vag looking wound and the sack of shit would interfere or make it harder. But thanks to the internet, anything is possible! Anyway I n
oticed an aching pain in my testes afterwards, but of course me being stubborn, I kinda brushed it off. I figured I was just really backed up and it would go away for days.

Of course, it didn't go away. Every time actually the pain grew worse, it was like an strong aching that lasted like a minute long. I also noticed something was up when (don't puke) the volume of my ejaculate seemed to be less, and came out in a more narrow stream. Now I knew something was up, so I did what any guy should do, I checked for lumps on my balls. I didn't find any really, but I noticed the tube on top of my nut, my epidymus, was tender. Me being the internet savy boy that I
am (see: above), I typed my symptoms into google. I learned that I could possibly have epididymitis, which is pretty much the term for "clinical blue balls".


Obvy, when someone's in a lot of pain, they're not gonna think about pumpin out tadpoles. Unless you're into that (see: first blog). I must have not done it for at least three weeks by the time I got ou
t of the hospital, and my friends can vouch for me that that is a personal best (sorry mom). So from being so backed up my epididymus got an infection and became swollen. Here's a picture of what that looks like:

And heres a picture of what that feels like:



So obviously I wasn't really a happy camper. I went to the doctor's and he in fact concluded that I had epidymitis. So from not getting enough action I ran into a problem. Sorry man, it's hard to mack it when you got a sack fulla shit (rhyme noted). Jeez, so what do priests do then? Oh yeah, they probably jerk off.

So to treat it, he told me to:

a) Wear briefs or tighter boxes so my balls don't hang and strain
b) Drink this NASTY antibiotic thing twice a day. I could've taken a pill but my doctor figured liquid would better absorb in my half-stomach.
c) Soak my balls in warm water twice a day.

Okay so by now my life is getting more and more ridic every day, so I just lol a lot, and do what he says. So now imagine a kid with a shitbag and vag wound, soaking his balls in a tubberware bowl filled with water. Laying in his bed on a laptop. Fortunately, I am an attention whore and I told all my friends immediately and we laughed about it. I offered them various amounts of money to drink my nut water, I think one said he would for seventy-five bucks. Sometimes I wouldn't empty the water after I was done and I would just put it on the table and go to sleep. The next day my mom would walk in and be like "what is that awful smell??!". Oh sry mom, that's just my dirty nut water.

So about a week goes by and the pain has lessened a lot. I actually didn't always soak my nuts twice a day, it was so awk trying to do that and lay down at the same time, so I kinda stopped doing it. But the doctor did say my testicles hang nicely (sup ladiez) and would be easier to soak. But it was still awkward and time consuming. Plus it led to a lot of itching and chafing that took like two more weeks to recover from haha.

So another chapter in my fucked up medical history is complete. Something else to put under my belt.

----------------------------------------

Here's what's going on with me now:

I'm going to get bloodwork once a week since I'm now taking 6MP and that lowers your white blood cells. I've been feeling fine from it, besides getting a pretty sick sinus infection. But that only lasted a few days and I'm on antibiotics now to treat that.

So I go to my doctor's today to what I though was to schedule my reveral surgery in May. Turns out that I'm actually not getting this thing reversed till August. Obviously I was a little upset, but I have grown to really be fine with this thing. I think I really just got bummed because I was telling myself I should be haha. But part of me was a little, just because I had believed for the past two months that this thing was gonna be gone by Summer. After driving home with my hand held down on the car horn for about twenty seconds I felt a lot better, and I'm over it now. Usually the time for a temp ileostomy is in fact 2-3 months, but the doctor said I was so fucked that he doesn't even wanna go near it till August. Whatever at least I don't have to cancel any shows or anything now.

I gained more weight, I think I'm at like 148 now. Fast food three days a week will do that, esp when you get like 3 burgers and shit. This thing was so bloated after a trip to checkers, we had to make a pit stop to empty it. The bag company fucked up again (fuck you convatec) and totally sent the wrong bags, so I had a clip bag with no gas filter. It felt like a pretty heavy brick on my body, and it even started leaking by the clip from all the pressure in the bag. In defense of my doctor, today I tried tucking my bag in my pants and it wasn't really that bad, until I ate food then it was a little more difficult, but only because my pants are too small for me.

Sorry for lack of updates! I am lazy.

Thursday, April 2, 2009

swappin shit sacks.

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 t
o 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 ge
t 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 yo
u 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 fe
w minutes, then smack that sucker down over your stoma.



























Delicious! Once th
is 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.