JAIL TIME

Macs are really cool, but that just took like an hour to do upload those 5 pictures.  But that wasn't really the macs fault it was me having no idea what the fuck I  was doing haha.

No NG tube yet.  They decided to try a day of just liquids (which eventually turned into a day with NO liquids either) to see if the blockage will pass on it's own.  So far no and my doctor will be here in the morning early so I'm thinking I'll have it in for a day or something.  Boners!

I was brushing my teeth before and it tasted really good.  Like yumyum good so I kept brushing.  I'm glad toothpaste is flavored, that's my way of cheating anything into my mouth.  Plus it's barely any toothpaste anwyays the hospital stuff isn't that serious. Does anyone know if they make peanut buttered toothpaste holy shit that would be really delicious.  But I would probably just end up squeezing all of the tube into my mouth at once which would not be good.

Here are things that I am excited to eat, which by the way might not be for like two  weeks if I stay in here on IV into my reversal surgery hahaha that would be so fucking silly like some DAVID BLAINE shit fuckers.  But um things I will eventually eat (no not all at once, and chewed like 900 times.  and in all caps) are:

1) FUCKING SCALLOPS

2)peanut butter and jelly on a saltine cracker with maybe like a cherry on it holy fuck.

3)toothpaste oh wait 

4) GREEN APPLE VANILLA CUSTARD GELATI SOMEONE STOLE MINE AND I WAS ALLOWED TO HAVE IT THIS MORNING.

seriously I was gonna write on my blog last night about how I'm excited I have something in the fridge to look forward to even if its in like 3 weeks.   I ended up not writing it, but like 30 minutes later or a little after 6...I get up to walk around and check the fridge and my gelati isn't in there.  I even had a nice label printed on it with my name wtf.  This made me sad for the beginning part of the day.

5)SOY MILK AND VANILLA MARBLE FUDGE ICE CREAM|

6)lobsterlobsters.

I 18 and in a bed surrounded by a laptop and a camera and ipod and cell phone all on a roller-over-the-bed-counter.  I'm going to get one of these for my house.  Made out of chocolate.

The only thing that could make this better was if seinfeld was on right now be right back.  I guess two and a half man will suffice..

ARGH SHIT NO ITS ON FOX.  THERE'S A NAKED MAN ON THE SUBWAY.

It would be nice to be able to come home for a few days, my doctor said today if this blockage passes I can go home on a full liquid diet for like a week until my scope and illeoscopy.  That's like so many milkshakes and ice cream and snapple.  

I miss my dogs. 

RWJ 5

Okay it's really like RWJ 4 Cont...I was out of the hospital for about a day and a half before ending up back in this lovely place.  Those two days consisted of nothing more than me really going to a dog park, going out to eat with friends, and eating a little bit the next day.  After lunch the next day with my dad I noticed that there was no more ostomy output into the bag again and of course this made me a little bummed.  So I put on some gym shorts, got my fanny pack a pair of headphones and bottle of water and began running outside.   Hard.  I knew that would help break it up and as I was running I even started burping a little and tasting the food I ate in my mouth, but it didn't seem to help really.  

After about an hour to no avail I headed home and jumped in the shower.  I talked to my parents and we decided that the earlier I go in the better, and that we could probably go in before the puking starts and it won't be as hard.  I take a long shower to try and cool off and dreading the next few days of my life, not really because I was bummed about going to the hospital.  I mean obviously I was a little, but I can deal with hanging out in a bed with family, wireless internet, video games, friends, and tv.  It's actually sometimes more convenient than having to do that at home since I've been bumming off our neighbors' wireless internet for like a few months haha.  The reason I was really bummed was because I didn't want people to know I was back in here again only like 2 days later, I feel like I'm like letting down my family by making them worry about how I'm doing.

Keep in mind that once I was discharged from the hospital last week, I solely thought the problem was just a mechanical regular obstruction, like me not chewing my food enough.  So once I was out I kinda just assumed a normal eating diet because that's what they told me I could do.  Of course after eating a chicken parm sandwich without any output I started to think maybe something was up.  

As I'm walking out of the bathroom to get ready to head to the hospital, I hear a loud fart/pop come out of my stoma and poop starts oozing out.  This is the most relieving thing ever but I know I'm still not out of the clear really, so that night I eat half of a pbnj sandwich and a little tuna for dinner.  The next morning there is some ostomy output but not as much as I would have expected, so I take it easy and eat some applesauce for breakfast.  The day carries on and still no output, so I try the running/bike riding thing for a long time.  Then that night around 6 and still no output we decide we should  just go in to the hospital before it gets bad, I'm barely in pain so we figure we should go just to get the situation under control.  

I opt out of taking a catscan, basically because I got one the last week and the only thing it can really determine is if the problem is an obstruction again or something serious, and it was pretty obvious that it was the same thing that happened the week before.  What was a bummer that even though we came in early, I still needed the NG tube again.  Me trying to be a big guy and thinking I can handle anything, I ask the nurse how big the tube was and she tells me it's only 12mm in diameter.  The week before they gave me a 14mm and my visiting surgeon was complaining that it was too small for me and I should have like an 18mm in.  So I ask for one, and we find out it doesn't fit.  The hard way.  Ow ow.  They tried raping both of my nostrils and couldn't get it in, so we go with a 16mm tube, which actually felt way way worse than a 14mm which you wouldn't really expect.

So I'm hanging out in the hospital not in much pain and the obstruction breaks in about a day and half which was great.  The doctors decide they want to do a special kind of test on me called an enterography, which is like a combination of a cat scan and an upper bowel series but shows more detail or something. They had to put orders in to get special stuff to do the test and the supplies wouldn't arrive for like a day or more so I hang out for another day.  Even though the obstruction broke I'm not on any kind of diet yet, still no liquids or solids. But they did give me some dinner every night, here's what it looked like for me 

eventually once they stopped giving it to me through the IV:

Mmmm gotta love it.

The next day they decide that they don't really need to do this test, they can get just as much information from doing a small bowel series.  So we totally just wasted a day for no reason haha.  That's the test that requires you to drink a shitload of barium, but since there was still a huge tube that ran down my nose and into my stomach, I ask if they can just pump it through there because one of the nurses mentioned it to me.  They say yes, and I am stoked because that stuff tastes like milky-chalky-cheap orange juice.  They get a big plastic syringe and start pumping two big bottles of barium into me and I am just loling and glad I don't have to drink that awful stuff.  Then we wait about an hour for the barium to go all the way through my intestines.  After checking with an x-ray to see if the barium has traveled far enough a few times, they decide I'm ready to go and take me into a room where a nice man pokes me with a rubber ball on a stick while x-raying me.  Here's a video of part of my upper bowel series, the guy doing it was nice enough to do it for a little longer after we found out my mom accidentally forgot to hit the record button haha:

Towards the end of the video I'm not sure if you can tell but you can see some strip-like rubbery (?) looking things near the end of the intestines.  Those are adhesions from surgery, which is what has been causing the blockage.  To me this was actually good news, because I was afraid that somehow the blockage was being caused by the Chrons acting up already again.  Adhesions are like fibrous tissue bands that grow in your intestine because your body has no idea what the fuck just happened so it tries to heal itself, having part of your intestines cut out will do that.

I'm actually really glad, (and still am!) that it's adhesions because the doctors said 75 percent of the time they do not require surgery, just bowel rest.  This upper bowel series did conclude that there could also be some leftover Crohn's from the surgery, but they can't tell if that is really causing any more problems.  I'm pretty sure I'd be in a little more pain if the Crohn's was causing a problem but I guess you never know...an ileoscopy will hopefully help reveal that.

I pass all of the barium and dump it out into a urinal with some poop in it and it forms a nice smoothie.  Notice how the brown poop was in there first but the still floated to the top since the barium is so thick.  Cool Science!

Eventually my diet gets advanced to liquids, and the next day (which I think was today?) My surgeon comes in and tells me that since I'm here already we can do my ostomy reversal surgery soon that way these adhesions don't become as much of a problem with the ostomy.  While this is good news, it's very all of a sudden, and he says he wants to do the surgery tomorrow.  I agree after realizing I'm pretty much giving up a month of my summer, it's been kinda shitty out anyways!

We were originally planning to do the surgery at the middle of August but my surgeon felt I would be fine if we did it now.  So I guess this is farewell to my shitbag, to tell the truth I am a little sad...there was so much more I had in mind to do!  So many more inappropriate things to say, so many more people to offend.  

My surgeon also said there would be a slight chance we would cut some more bowel out depending on if the Crohn's seems like it may cause future problems.  He was just gonna kinda wing it and see what was up once they cut me open, which I was actually fine with because I'm lucky enough to have a pretty great surgeon.  Not like I really know from experience, but I saw this plaque on his wall from like an "America's Top Surgeon's" magazine and it really put me at ease.  

A little later, the other doctors come in and opt against the surgery, this was after I signed away on the papers so we had to cancel everything and make sure it goes through.  The reason being was that although my surgeon might rule, they wanna know exactly what they're dealing with when they connect my intestines back to my colon.  So they want to do an illeoscopy and colonoscopy before the surgery.   Unfortunately, they can't do it until next week, so I'd have to be sent home for a few days.  This was the ga

me plan until like about ten hours ago.  They advanced me to a soft-food diet and I order some dinner.  Stir Fry with tofu, some pasta with tomato sauce, and mashed potatoes.  

This looks like a lot, but i probably ate about only like 40 percent of this food, over the span of like twenty-five minutes.  My dad ate most of the remains hahaha.  While I am eating, I am super careful, chew everything 30+ times, and exclude all the vegetables that came with the stir fry.  I even ordered the sauce and gravy on the side, but they just put it on the food and also on the side so it was like having double sauce so I just didn't use the extra obviously.   

(side note: MAYBE THAT MEAL GOT STUCK BECAUSE THAT MEAL WAS LIKE 80000 FUCKING STARCHY CARBS YOU DICKHEAD).

I guess I should mention I'm taking all meat besides fish out of my diet.  I'm stoked on eventually trying tofurkey tofu hotdogs tofu burger and all those cool things and hopefully I'll be able to stick with it for a while.  Plus fish is fucking awesome.  I was talking to a really nice student nurse here and she was saying how taking out meat really challenges you to try new kinds of food, especially if you're just used to eating the same stuff all the time.  I mean it's only been like six days of having this diet, and within those 6 days I really only got to eat like 3 actual meals, but so far I've been holding strong!  Time will determine whether or not I actually have any kind of will power.  But sushi is so awesome shit!  I think I'll be okay for a while. 

So anyway back to eating this meat-free meal...I def took some precautionary steps to help prevent any irriation, but it didn't really seem to matter and I am obstructed again!  Whatever, I guess I just won't go home until my scope and reconnective surgery.  Better safe than sorry and I really don't mind being here.  The doctor is going probably order an NG tube to be put in again tomorrow I'm thinking.  I don't care, fucking bring it!  That's the best way I've learned to deal with everything I have to go through here.  It's really the best way for me at least.  Tackling shit head on maybe with a laugh on the way.  

My spirits are pretty high still, I hope this blog doesn't sound like I'm wah wah-ing too much, I'm just really tired...it's 4:45 A.M and I still haven't slept.  I did walk around my floor and run in place in my room for five minutes but it didn't really help.  I feel okay though, I def feel some pressure but it's not painful.  I'm back on a clear liquid diet but I haven't really drank anything since that last meal I had...it's kind of hard to judge because while liquids could help flush the food out, they also might just cause more pressure if nothing is going through so I'm not really sure what to do. 

I've been living vicariously through playing Rollercoaster Tycoon and writing music on the computer.  My sister bought me a fucking MacBook Pro and I am typing on it right now.  It's like so easy that it's hard to use almost, I'm way to accustomed to windows. 

Anyway, I'm doing fine, here's a picture I took from my charts that can summarize about 80 percent of this blog:

I'll probably post again within a few days once I know what's going on really.  In the meantime I just saw a weather forecast today and it looks like it's gonna be a shitty day!  Glad I'm gonna be nice and cozy in this hospital.

So I'm on the road to feeling better, it just is long process but I can handle it.  The only thing I'm really afraid of is running out of things to blog about haha.  Okay it's like 5:30 ttysoon.

RWJ part IV

Okay....so I've had an update lined up and I even took some pictures and actually planned out my thoughts and put some effort into what I was going to write and I just haven't been able to get around to it. That blog is gonna be put on hold a little because this one takes a little more priority and is a little more current being that I am sitting in a hospital bed right now and I haven't eaten anything since this past Friday morning. Not like I'm hungry, but it sounds really cool when you consider how it's about to be Wednesday and shit.
So of course there can always be complications with an illeostomy bag, even if it's not directly Crohn's related you can still have a problem. That little pooper is only so big so if you swallow whole pieces of food or quarters or something chances are you will end up in a jackpot. Unfortunately this was the case for me Thursday night. After a trip to the local Cinnabon/Food Court at Menlo Park mall I woke up the next day and realized that I had barely passed any food from the night before, which is usually never the case...I usually wake up like twice in the middle of the night to empty my shit just so I don't have to worry about waking up being sauteed (sp?) in it. So I woke up on Friday, didn't completely realize yet, went out to do some work and stopped to get breakfast while I was out. By like 2pm I'm starting to feel some stomach cramps and I look to see one of the scariest things I have seen wrong with my body in a while...

...a severe lack of shit. An illeostomy bag should NEVER really look that clean unless you haven't eaten in like a day and/or you just put a new one on. This pic is actually taken from Friday night, but this was what I was looking at all day.
However, cramping does not really get that intense or bad and of course me thinking I can fix everything by myself I google stoma obstructions and learn that they can pass on their own within 6-8 hours, but if they don't by then you should seek medical attention. I keep doing some reading even though the pain still is not even really there except for maybe like five minutes out of every sixty, and I find a tip that if you feel you have an obstruction and it might possibly be near the end of your intestine/beginning of your stoma, you can stick a part of your fingertip in your stoma to try and break up some of the food.
A few hours later, a combination of my fear of returning to the hospital for the fourth time combined with the amount of marijuana in my body at this moment of time lead to some of the sickest fucking pictures ever.

Ready and...

Fire! Hell yeah. Even though I was slightly worried at this point in time I still had to take advantage of this photo op and send a text to a few friends. Plus this is the most action I've really gotten in a while from anything so it was def a fun time.

After a few minutes of finger wiggling to no avail, I pack it up and head home. By now it's like 4pm and I have a show this night in north NJ.

Keep in mind that although I knew I had a possibility of going to the hospital, I'm not really worried at all. The pain by now is at most like 10 percent of what it was the other times I was hospitalized, so I'm really feeling fine and walking around and stuff. I was at least smart enough this day to NOT eat anything after breakfast and pass up on buffalo wings for lunch. For the rest of the day I'm drinking plenty of water to try and flush everything out.

At the show I think I'm feeling alright and then suddenly walk outside and puke up all the water I just drank. Slightly stubborn I feel like I still might have a chance at passing this thing and decide that I will go home right after we play which is like in twenty minutes anyway. During our set I'm feeling pretty alright until towards the end, one of the last songs I'm playing really weak (but still almost in time!) and as I'm playing I fucking puke up water all over my snare drum. The greater part about this was that it was so much that as I'm hitting my drum it is all splashing up in my face. After this song we wrap it up and I head home with my friends. I'm still actually feeling really okay but I know I should try and take care of this. After a last attempt of trying to take a bath and relax, we decide I should go to the hospital after my sister walks into the bathroom and I'm standing up naked and puking all over my dick. I put a new bag on, make sure I grab a camera and things, and we're off.
So around 11 pm/midnight I'm in the hospital chilling out. I remember as I walk in the ER drop off I feel the urge to puke and I go up to a garbage can and apologetically tell the sick people around it: "excuse me, I'm really sorry...I have to throw up" ralphralphralph a few minutes later after a bunch of people leave from being grossed out I am on my way towards the ER. I was really only puking up water and maybe some bile, but I guess watching a stranger throw up is a little strange to do, unless you're soneone who watches awful things on the internet.

...Which brings me to this video. This is me waiting to get dispatched into a room upstairs on the adoloscent floor. The video is a few minutes long so if you just wanna see the good stuff I would fast foward a little bit. This is an NG Tube (nasal gastro), being inserted up my nose and down into my stomach. Fortunately I have the fucking coolest sister ever and she hid the camera under her sweatshirt and got this footage.



Sorry if that's a bummer to anyone or a little sad! I've really had fairly high spirits most of my stay here. If you see me sticking my tongue out in this video, that is not being extremely sick, but that is my effort to try and be the funny guy and make sexy faces while they fuck my nose with a plastic hose. I think I explained what this tube is like in my first blog, but as a refresher: it's there to suck the shit out of my stomach, and it feels like you have a popsicle stick in your throat. The tube sucks up bile blood mucus and any blockage and sucks it into a nice tidy bin where you can add a tap and serve it to any of you friends.

What was kind of a bummer was that this tube and this obstruction caused some awkward pressure buildup and interfered with my diaphragm somehow and gave me a bad case of the hiccups that I had for probably about 40% of my first few days here. I would even wake up in the middle of the night and just start hiccuping.

After I get this tube in I'm off to get a CatScan. As you might be able to hear in the video I'm on the "no drink or eat" diet so they pump the formula down my tube so there is good contrast on the tests. Fortunately I held it down right up until about 10 seconds after the scan, this is me in the hallway after.


Yum yum gotta love that gritted ass attempt at a smile!

Okay let's fast forward a little bit, because nothing really happens for the next day or two...which is maybe something to even talk about. It gets a little worse for the next day and a half...I'm still walking and moving around but the pain becomes a little more intense. It's still nothing compared to what it ever was, but it's starting to get bothersome. This time in the hospital, I was a little more open to taking painkiller drugs to deal with some of the pain, because really after four times you don't want to deal with this shit any more haha. I still DID pass it up plenty of times, and I probably only got morphine like 4 times and that's it, compared to people who would milk the shit out of my situation and just be fucked up all day I think I'm alright...however I did think I was a ghost with "butter hands" at one point and I woke up later and had no idea what was going on.

A highlight of those two days was that the old associate of my old GI doctor came in, the one we chose not to see anymore...and the one I think I wrote about previously a few blogs ago and said something like "fuck you". He was like "what happened? we were scheduled to come and then you cancelled!" And I was so happy that I got to tell him that I started seeing another doctor and I thought the situation was handled very maturely especially on my end because this guy was kind of a jerk but I just told him the deal. He said it was fine and that he wishes the best and said he was gonna find the GI resident for the hospital who was taking care of me and give them the scoop so they can help me more.

He then leaves and comes back 10 seconds later with the female GI resident that def had some respect for me since I usually know what I'm talking about when it comes to Crohn's and we had a good talk earlier that day... and he pretty much just tries to make me look like a dick head, calls me a "puttz" for going to the hospital so late the 3rd time that I got a preforation, and calls me a "rock star" because I left for tour a few days after coming out of the hospital the first time. There's a difference between being parently and being a fucking asshole, and I really don't think you are either of my parents you fucking tool. I was totally content with where we left off two minutes ago and I was planning on never having to see you face again, but I guess if you need the last word to an 18 year old kid that's totally fine. Fuck you schmuck.


For the rest my time the next few days some of my friends kept company with me and hung out which was great. I didn't try to tell a lot of people I was here again...not like I didn't want to tell people I was in the hospital, but really I wasn't trying to. There's a lot going on right now, and this shit just gets in the way I feel like. I always know I'll be fine especially with my loved ones around, and it's not like my friends aren't important! It's just this happened four times, I know the drill, and I know my friends care a lot. A bunch of them still came to visit and did nice things like stay for long and talk, send nice texts, bring video games, and even a porno magazine (Black Lust baby!). Even the whole Maroney family was with me in some kind of way! I texted Mike Maroney Photography(R) this picture and told him to tell his dad I said thanks since I got to stay in his sick ass sponsored hospital room.

Hospital stays for me aren't as scary as they are for a lot of people. Just because I'm in the hospital doesn't mean I'm deathly sick or dying or fucked for life...it means that I can't take care of my problem on my own and need all those neat facilities and gadgets the hospital has to offer. I was telling my sis "dude if I had IV and a suction thing and some steroids and drugs I would totally be able to handle this, I just don't. " The medical plan was pretty similar to the plans the other times, bowel rest, then some steroids, then some antibiotics. Of course if this shit didn't pass this time it would result in another surgery, not as severe really as the other one, but still surgery. A day and a half in, my doctors start getting worried that nothing was passing still. Then on monday afternoon, I finally pass a respectable amount of liquids. That night I walk around the floor with my sister for a while and feel everything breaking up, I even wake up in the middle of the night from a huge gas blurt let out from my stoma and just say "holy shit noelle did you hear that?"

The next day (today!) I go for another walk and then the GI doctor on this floor comes to talk to me to try and work out a plan to try and get more to pass from my body. Her planning is interrupted by a huge ass fart and me filling up like more than half of my bag with a huge ejaculatory diarrheal 14 second poop shot in which she stops talking and we both just stare at my stoma. Right after this, she stops, smiles and says "okay never mind you're good!" And just leaves the room laughing out loud. I wish I could of recorded how much shit came out of me, I mean we recorded the number since we had to, like 600CCsor something, but I wish I taped it haha.

More friends came to hang today, magicians came and did magic. And then we finally got to take this NG tube out. Hopefully this video is a little more uplifting, I keep getting that clown-pulling-an-endless-ribbon-out-of- his-mouth vibe from this footage but it's so great!


Better days are coming, they always are. Tom I prob will be put on liquids and maybe solids and the latest I should be out of here by is probably Thursday night! Just in time for the weekend! PARTY!

freak.

I can't do this anymore. I know I usually don't get emotional in my blogs or express my feelings but I think it's time I do it, it could help a lot. I'm sick of being looked at as a freak. I can't even go in public without someone noticing it. You think it wouldn't be that big of a deal and people would be understanding, but that is never the case. People don't even realize how hard they are staring, some people even fucking laugh right in my face. I need someone to talk to that can help me be alright with myself and how I look again, this is getting too hard and I can't take this much longer. This has become more of a burden than I ever thought it would be.

I got used to it, why can't other people....


Before you even ask yourself, the answer is YES THAT IS A FUCKING MUSTACHE, AND YES I AM THE MAN. Also if you didn't get the joke, I was whining about my mustache, and no it didn't get that many laughs, most people thought it was sick as shit, most of my friends did at least haha. Plus it made me look like I was 35 which was pretty sweet. Also if you are one of my friends you know that this is being written in the past tense as I shaved my mustache about a week and a half ago, but I did have this sick ass picture of it, and I will keep it as proof forever.

Now I'm rocking the clean face for a while, giving the beard a rest. I figured the shitbag was already enough a woman determent (oh man but it's not always, ask for the story), and a mustache I thought would just make it even harder talk to the honeys. Not like I'm really trying to anyway but whatev.

Anyway, sorry I don't update this that much! I've been enjoying the shit out of my summer. I find myself almost everyday saying or at least thinking "fuck I love my life". Chillin with friends, sickest job, and more chilling and playing shows. I could probably do this forever. For anyone wondering I'm a driver for my dad, so I'm either driving a big van delivering bread with the radio on or driving around collecting money in a car with cds playing. As long I have some music I'm alright, plus I already love driving so it's very fun. I actually just came home from six hours of driving all around central NJ and figured since I'm in work mode I should try and be productive with this blog. But the thing is, there's not that much going on. I don't wanna just update everytime I think of a funny poop joke or something, then I'll feel like an illeostomy whore. But then again, me and my friends have been thinking of pretty awful videos to make that we probably will film by the end of summer and that I will def put up.

I did visit my doctor a few weeks ago and he told me I'm doing great. I gained so much weight and I keep gaining it, I'm probably close to 160 now, which is the most I've ever weighed. I've been pigging out on everything haha, I'm about to actually start watching what I eat so I don't get too chubby. I have an appointment with my surgeon next week and then June 29th I'm going to my other doctor in NY, where I'll be getting a colonoscopy and an illeoscopy. Fun new exciting! If you can't guess, an illeoscopy is where they stick a camera down your stoma and check out your small intestine. I'm gonna try to bring my camera and talk my doctor into taking pictures or something, but I feel like he'll be like lawsuit skeptical or I'll have to sign papers.

My sister came home from a 3 and half month stay in China last week. She left two days before I was rushed into the ER and had surgery done, and we didn't tell her until about a month into her stay. Once she found out, it was during the time I also gotten that nut-tube infection, so she mailed me this nice poem from China:



Isn't she the best?! I'm really happy her and her "boo" John are home because they are both great. Here is a pic of them taking advantage of all the touristy happenings and putting on some fly ass Shanghai-gear:


This is also one of the funniest pictures I have ever seen, ever.


Anyway, about a week ago someone told me how much my blog is helping their friend who is going through the same thing, and it felt really awesome to know that me talking about shitting on stuff and making jokes actually helped someone, and it totally made this whole thing worth it. Hopefully people will keep reading even though I don't consistently update, and hopefully my plan to be on Oprah and fingerbang the shit out of her will fall into place.

Stay shitty.

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 from 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 sweat 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 like 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 semi-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 check 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.

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.

--------

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.

shit n' run

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 blumpkin 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 attempt 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.

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 noticed 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 out 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.

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 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.