First Disclaimer: I probably will say/post bad words/gross things/bad things/bad pictures. But hey it's a butt disease, get with it!
Hey, what''s up my name is Joe, I'm 18 years old and I have Crohn's Disease. I honestly think I have good luck, I'm pretty happy with my life and a lot of things do tend to work out in my favor. Even my friends will jealously say I have good luck, I bet people even said it to me as I was in the hospital after surgery haha. It really just depends on how you look at things I guess, I stay really positive all of the time about everything pretty much, because I don't take anything for granted. Shit could be so much worse, but it's not. You just gotta roll with the punches brahh. ps I have two dogs, and they rule, I have photographic proof.
So today my doctor told me I should write a book, because I'm a good sport about everything and I've been through a lot, and that it would help other people out going through the same or similar things. Instead of trying to write a book at 18, I decided a blog would be the better way to go ha. I know I got a lot out of reading other people's blogs on the web so hopefully this will be useful to someone, or at least help me get ladiez or something.
Anyway, I was diagnosed in July of 2007, after draining a huge rectal abcess and following it up with a colonoscopy. That's a whole story on it's own. I will actualy admit that in the past three months I have been through a lot. I usually won't admit to stuff being shitty or me being in pain, but these past three months were probably the most testing in my life. fuck. I'm really lucky to have awesome family, and friends, and a band to look forward to playing live with, because having something to look forward to made it ten times easier to get up in the hospital.
For those of you who don't know what Crohn's Disease is, it's cool I don't really either haha. I mean I know it's an inflammatory bowel disease and I have it in the end of my small intestine, which I think is called the terminal ileum, and the beginning of my colon. A lot of people will tell you that most doctor's don't really know what Crohn's Disease is either, they just pretend to. It can be very frustrating when you have different doctor's saying completely different things, but all of them agreeing on "it's not what you eat that does it!" Idk man. What I do know is that if Crohn's Disease is not treated properly, it can be very painful. I would suggest no one to really take any advice on what to do from this blog, because I would feel shitty for misleading anyone. But, I can tell you things that you SHOULD NOT do. I'll try and point out bad ideas I had as they come up. Here's one that I learned about a month ago:
TRYING TO BE A MASOCHIST IS NOT A GOOD WAY TO DEAL WITH CROHN'S DISEASE. I hope that doesn't need more explanation because that would be awkward. But just don't do it, unless it kinda works. Did not for me.
Being that I aptly titled this blog "teenage shitbag" I'll go into a little explanation. It kinda has a double meaning, not like I'm really a shitbag, I'm a nice guy! But I'm a little on the open side, and it's kinda gross I guess. I'll talk about anything with anyone really, I don't mind.
If you haven't been able to guess what the second meaning of "teenage shitbag", I'll go into it a litte more explanation.
Over the past 3 months I have had a very rough time with the disease, from stress, food, whatever. There's a lot of stuff that happened in my life in the past three months, I lost a lot of loved ones, I was supposed to "go away to college", I went on tour with my band for two weeks. I'll just get into the basics of what went down with my body physically before getting into all of the stories around it.
I was hospitalized three times with a bowel obstruction. I knew I had one the first time and I knew that I needed to go to the hospital because I read up on it. Also you can feel your stomach making awfully loud noises and trying to push food through, and you can feel it being stuck in one spot. Very painful. When you try to eat anything you will throw it up, I tried to eat two tums and puked it up in ten seconds, and my stomach was so spastic it couldn't even handle a tiny sip of water. I tried to just take a bath and relax because that usually helps, but the pain was too unbearable, I read up on it a little more and realized I had a semi-serious problem. So after diagnosing myself we rushed to the ER where they had to do some tests I think an x-ray and a catscan, and a few hours later found out that I was in fact partially obstructed. So they put me on bowel rest for a few days, just IV and some morphine occassionally, though I did turn it down a lot (bad idea).
When I was first diagnosed, they put me on pentasa 500mg, 3 pills in the am, 2 at lunch, 3 in the pm. After this hospital incident they put me on 60mg a day of prednisone, which is a steroid, and i think 500 mg of flagyl (metronidazole) as an antibiotic. That stuff made me really nauseous eventually but I only had to take it for a while. They also started me on Humira, which is an epi-pen injection that's supposed to work really well for people with Crohn's. The first injection was four shots, two weeks later two pens, then every two weeks after that only one. I'm kinda immune to needles by now so it's no big, but I'm not gonna lie the first four shots was not a good time haha. After being released from the hospital, I felt good for the next two and a half weeks and things were looking good.
A few days later, back in the hospital! Sick dick. Slowly weening off the steroids is tricky, as well as eating right all the time. Crohn's has a tricky diet, you really have to listen to your body when you eat, because I bet theres 20 sites that say what to eat and 20 other sites that have those same foods listed on the DONT EAT list. Plus, me being an 18 year old kid who goes out to eat with his friends isn't always great. Not to mention, a few days after I was out of the hospital the first time, I left for tour out to the midwest and back for two weeks, pretty much living off fast food, which does have some healthy options, but shit man it's hard to pass up on that cheesy gordita crunch. But I actually did watch what I ate 90 percent of the time and I was feeling great for most of our time out on the road. But the day we got home I felt something bad happening again, even though I just finished eating my aweseome McDonalds parfeit. The next morning it was back off to the ER.
This time I knew I was in a jam a little earlier so I decided to go to the hospital a little earier, however the pain was still pretty bad. Another x-ray and catscan confirms the same thing..I could have just told them that. I was only in for about four days this time opposed to the six or seven days the last time. But this time I get a sweet GI tube, which was lubed up and inserted down my nose and into my stomach and sucked out all the puss and blood. Totally puked when they put it in, but it's not so bad after that, just a little uncomfortable, and definitely puked up the stuff they make you drink for the catscan at one point, but that stuff taste like shit anyway. The tube was in probably for a day and a half, then they took it out. Besides that, same drill, IV fluids for a few days, then jello and liquids, then solids. This time one of my gastro doctor's associates comes in, "you know what happens next time you're back don't you? surgery."
I really don't like that guy. Not because of that really, but something about him. Anyway I was just like "okay", I'm obviously going to try to not go back into the hospital. However this time when I was discharged I wasn't feeling as great as the last time...I overate one night in the hospital and felt a little pain.
After I was discharged I almost immediately relapsed and had to go back. This was towards the end of Jan. However I stuck it out by myself (bad idea), pretty much only ate jello and pretzel sticks dipped in baby food for a few days. And eventually I was feeling better. Fast forward about three weeks, I am an idiot and I eat a fucking hot dog. It's weird because prednisone makes you feel really great then you eat one thing and next thing you know you can't poop for like five days and you have an insane amount of pressure in your intestines. I gave myself an enema (bad idea, but it did help) and after the second one I felt a great painful pressure in my colon and then without any control my colon had a muscle spasm and pushed out some poop. The next few days going to the bathroom would be like this, a great pain then a pushing out, me no having any real control over it. A lot of the time whenever I stood up I would have to run to the bathroom.
It's around this time where I start smoking weed...sorry supportive family/adults who respect me reading this...it helped! Not really enough to completely fix me but it still helped. It also made passing time watching cartoons way easier.
Anyway, I get worse, a lot worse. I try the jello/baby food diet again, but it's no help, whenever I try to eat any solid food it kills me. A few days later I can't breathe from the pain, can't really walk or even lay down. I'm sitting up on the couch panting and I tell my mom we need to go. I wasn't afraid of surgery, I just wanted to get better.
Waiting in the ER I am probably feeling the worst I ever have in my life. Pain killer only made me extremely dizzy on an empty stomach, and I can't even inhale enough to smoke. I'm spacing in and out but at the same time I feel like shit. Eventually I start shivering and ask to be covered in 6 blankets. Another x-ray and catscan confirms that I have perforated my bowel on top of being obstructed again and I need to go into surgery that day. A chubby nurse puts a catheter in my peehole, which didn't hurt that bad actually! I was so stoked because anything in your pee-hole never sounds like a good time. But it didn't hurt! Or maybe I really am becoming part masochist, werd up. Also got another GI tube stuck down my nose, probably puked again, don't really remember. Eventually I'm off to surgery. This guy starts shaving my stomach and next thing I know I'm out.
I knew what the procedure was going to be and what everything entailed, did not care. Just wanted to not be in pain. The surgery itself is not a very dangerous one I don't think, but what comes with it I guess is kind of a big deal. I knew since the first time I went in that if the obstruction gets worse I would need a small bowel resection, which would afterwords require wearing an ileostomy bag for a while. It's whatever, I have a sense of humor so I thought it was kinda cool, plus I like showing off stuff like that to my friends. If anyone of us would have a butt disease, I am the most appropriate candidate.
So I go into the surgery room and this guy starts shaving my stomach. Next thing I know I'm out. I wake up about four hours later and there are more tubes in me. I can't breathe for shit and the nurses are telling me "okay you need to breathe now". They were arguing about whether or not to leave the breathing tube in me. When the surgeons opened me up the doctor said it was so infected and puss was everywhere and that they should leave it in over-night because I might not be able to breathe when I wake up. So when I wake up, I in fact can't breathe. And two doctors telling me urgently "breathe breathe!" and I can't at all. It was actually one of the most awful things ever. I just shook my head at them like "what the fuck do you want I can't man." Something else was in my nose and making it like impossible to breathe. This ironically was my oxygen supply. So she pulls it out and I gasp for air. I can breathe, by then my parents have left but I get on the phone with my dad to talk to him. I think I just say "yooo what uppp" and some other stuff. I was probably still pretty drugged up at the time, but either way I probably would have started the conversation the same way.
So they take me to the surgery recovery floor after waiting in post-op for a few hours. They cut 20 inches of my small intestine and part of my colon out, which is where not only the perforation was, but most of the disease. I can't drink anything so every 20 minutes I ask this nice lady to swab my mouth and tounge with this sponge thing dipped in water because I was getting serious dry mouth. I'm in and out of sleep, but mostly awake. Once I get to the surgery recovery floor they hand me a breathing unit (spirometer ^) and tell me to start going at it. I can barely do 250 ml of air pressure. Which you can see on the picture, is barely anything. It felt like I was breathing through a straw for a few days and if I tried to any harder it either felt impossible, or hurt really bad.
So I fall asleep and wake up a few hours later with a better sense of consciousness, knowing what's underneath my gown, and not really feeling like looking. My mom comes and visits and I'm still really drugged up but I'm talking and doing okay. My heart rate is really high I think? Like in the 110s, and it stayed up there for a day or two. Eventualy it got down to the 80s. Then the doctor who performed the surgery comes in and asks how I'm doing, then tels me how bad the infection was and says "you're going to feel a lot worse for the next week, it's going to get harder." Apparently that infection was supposed to spread get really bad and I was supposed to get painful abcesses on my insides and get an awful fever. I'm really lucky I didn't because that would have been awful.
So a little later the resident doctors come in to see how I'm doing and they want to check the incision out, it was all padded up so they took it off. There's like a eight inch gash down my lower abdomen, probably about an inch and a half deep. First thing I do when I see it besides say holy shit, is give the doctor's a big "timeout!"
I grab my cell phone and snap a pic.
Gnarly. Sorry if that's gross. First thing I thought was "labia" when I saw it. I showed my grandma too a few days later and in a old fasioned Italian accent she said "ayy ita look lika vagina". She then showed it to the nice girl who was bringing me food and the said "ayy don it look lika vagina?". That girl got creeped the fuck out and peaced.
The reason they left the cut open was avoid "sepsis" which is pretty much a really bad infection of the whole body. Usually when people get this surgery they can get it stitched up, as long as it's not too late and you're not already really messed up on the inside. You can also get this surgery (ileocolic resection) done laproscopically, which is supposedly way easier since they only cut tiny holes and work through those. It's not as evasive as just being ripped open and having your insides cut up. However since my situation was kind of an emergency and I already had an infection, both of these things were kind of out of the picture.
So anyway back to the incision. It needs to be redressed twice a day with the dressing dipped in saline and peroxide. Not so bad, not so painful at all. Sorry if so far this has been really bad, I'm just being honest. But after surgery it gets better! Well...a few days after surgery at least. Not gonna lie being cut that deep hurts for a while...here's another pic of that cut about eleven days later:
Now onto the shit bag! Not so bad at all, definitely was awesome when I first saw it. However for the first few days my stomach was readjusting and had to use different parts to absorb everything, so it was coming out very liquidy and smelled like shitty mocha coffee. The smell of coffee already makes me vomit, so this shit coffee was even worse. Also once I was on foods I would burp them up and it tasted like how the shit smelled, if that makes any sense. If you went through it you know what I mean. So I start eating pretty soon and walking around is painful but I'm doing it. Still losing too much liquid though, My bag would fill up a lot every day and it wasn't solid at all. I lost 4 liters of poop water in one day at one point, which is not good. So they put me this drink that slows down the digestion process and eventually it helped.
Also, the bags they gave me in the hospital had a clip on them and were kinda inconvenient for emptying. I had a few accidents and poop spills everywhere. The most important thing to remember is to stay positive, it gets better and way easier to live with. When you spill shit all over you self, you just gotta laugh! Anyway, I lot a lot of weight... I was down to like 125 pounds probably, and I really should be like 155. But slowly I started gaining my strength back and every day was definitely a step forward. A few days after surgery I pooped out the rest of the leftover poop I had, which was only so painful probably because I messed my butt up with that enema.
10 Days later I was discharged from the hospital. Really bad pain stopped a few days after being discharged, and I was off of painkillers about four days after leaving the hospital. The awesome thing about the surgery is that you can eat whatever you want after since nothing is connected to the part where your disease was. Most of the pain from the incision stopped about a week after being home and I started feeling way better. I was able to move around at home but I would get fatigued quickly, and would get headaches a lot. It's important not to push yourself too much, but to try and do a little more every day.
Now, my incision is almost completely healed and I started walking straight about three and a half weeks after surgery. I ordered different bags that are velcrow and have a filter for gas on them, way better because it doesn't blow up like a balloon, and way easier to open and close. My mom was taking care of my wound dressing for a little more than a week, but then afterwards I felt well enough to change my incision packing and bag and stuff by myself. I feel almost 100 percent now, and I get to make awesome poop jokes all the time. Like I said, a sense of humor is kinda key. Or if you're older and aren't into poop jokes, at least have light spirits about everything! My bag is only temporary, but honestly once you get used to it you don't really mind it all. Here are two pics of me I took today, four and a half weeks after surgery.
Unfortunately one of the side effects of Crohn's is having a really hairy chest at 18. It's tough but I've learned to cope.
So obviously you can notice I'm wearing something around my torso over my dressing that has concealed the bag. It's called the Phoenix Ostomy Support System. I kinda like wearing tighter clothes, and I wasn't a fan of tucking a bag of shit into my pants like the doctor recommended. Plus that was unfair to all the ladies who thought it was my package, but in fact it was just a bag of poop. So I looked online and found this belt which holds it in place strapped to your stomach. It makes everything way easier, and I've found that my wafer and all of my bag stuff stays on for longer when i use it because it's not always constantly hanging and pulling. I would post the link, but then I'd feel like I'm trying to sell it too much. Just google it and you can find it.Here's the incision and the bag uncovered. Like I said, not feeling any pain at all in the incision. Wearing the bag stops being noticable after like a few days. At first your stoma is huge and gross but eventually it shrinks a lot and you can't even really feel it shootin poop. The most pain I feel every day is from ripping the god damned tape off of my stomach twice a day. Hopefully if you aren't a wolverine like me you won't have that problem.
Right now I'm weighing in at about 137 pounds. So I've gained 12 pounds about a month after surgery. I was eating a bowl of organic ice cream and drinking a tall glass of vanilla soy milk every night. Like I said, you can probably eat regular ice cream and drink regular milk, but I kinda grew more accustomed to the organic stuff anyway so I prefer that now. I'm going out every day and pretty much back to doing regular stuff, except I'm still not allowed to lift more than 15 pounds. I pooped a little today, you still do like every week or two. But I still like to say I gave up pooping for lent, just because I couldn't really think of anything else.
The reversal surgery is 20 times easier since I'll get stitched up after they cut me down the middle and I won't have a huge incision to treat for a month. While I'm looking forward to it, I know that the Crohn's will have more of a chance of being active since I'm going to be using the part of my intestine where the disease was. They'll start medicating me soon though, probably back on Humira...which is supposed to work way better post-op.
I'll probably post other stories or something in a few days, or make a post about how to actually change the bag for people that wanna know before they get it. It's not hard once you get the hang of it, but it is trial and error until you actually do.
I really can't stress enough how much being positive helps. Listen to your friends and family and try not to get angry at whoever is taking care of you, if you're lucky enough to have someone. If anyone reads this and has any questions let me know, I'll try to the best of my ability to answer. This surgery wasn't the end of the world for me, but more like the beginning of finally getting this all under control.
Shit happens, but sometimes it just happens to happen in a bag. Be posi.