A teenager diagnosed with Crohn's in 9th grade explains the disease, which affects 700,000 Americans. They manage it with Remicade infusions every five weeks plus pills, strict diet, and water only. The biggest challenge: others don't see the pain and fatigue, so they think you're fine.
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What's up guys, hopefully you're having a nice day. Before I move on to the topic, I just gotta mention something real quick. Someone's mowing our lawn right now, so you might hear a lawnmower. Sorry about that, um, kinda doing something later, so I can't really do this video later. So, uh, I'm pretty sure you understand. But I just wanted to talk about what Crohn's disease is, and the reason I wanted to do a video on it is because every week thousands of people are diagnosed with it, and hundreds of those people are teens. And I know a lot of people search "what is Crohn's disease" on Google, on YouTube, and the stuff that pops up, there's nothing really from a teenager's standpoint, you know, like a teenage person who's currently going through it, just, you know, telling you what it is and how it affects them. A lot of the stuff that pops up, I don't know, I just don't like it. So I decided I'd do a video on it. So in case, you know, you're searching for this video because you have a relative who got it, or in case you were just diagnosed with Crohn's, this is gonna be my video on it. I guess I'll start off by telling you my story with Crohn's. I got it in 9th grade, and I was going to the bathroom like 7 times a day. I had unbelievable pain every time, threw up like every other day, and I lost 30 pounds, spent an entire summer laying in my bed, um, tons of fatigue, bunch of problems, yada yada yada, give me your sympathy. And then I got on Remicade, and I'm still on Remicade right now. I'm in remission. I get Remicade every 5 weeks, and I take pills every Saturday. I'm on a really, really strict diet. And I feel normal. I actually feel kind of good right now. So, uh, yeah, it's mostly because of my diet. I have— I mean, beyond strict diet, but it's just because I like to feel normal. The only thing I drink is water and I eat the same thing every day. But, uh, if that, you know, if that's what makes me feel normal, then I'll do it for the rest of my life. But, uh, I guess I should go ahead and tell you guys what Crohn's disease is. It's an inflammatory bowel disease. I know you don't know what that means. I don't either. And it's when your small or large intestine becomes inflamed. I don't know what inflamed means either. Just go with it. And, uh, your immunity system goes whack and it starts killing good bacteria with the bad bacteria, which it's not supposed to do, obviously. And then 700,000 people in America have Crohn's, and 7 out of 10 people with Crohn's will end up having surgery. That's a lot. And hopefully, if I'm, you know, diligent with my diet, I can stop myself from, you know, going over the edge and having to get surgery, because, you know, no one really likes surgery. But, uh, from my personal experience, the two worst parts of Crohn's is no one knows you have it. Like, you can't look at someone and tell they have Crohn's, and you could be in unbelievable pain and just have all these problems going on— fatigue, low energy— and someone just thinks you're in a bad mood. They like don't even know the whole story, and that's not their fault. I mean, it's Crohn's, it sucks. And the other bad thing about Crohn's is no one knows what it is. A lot of times I can't get out of going to a fast food restaurant, like when we stop after sports games, and I just really, I I'm far away from my medicine, I can't really afford to cheat, so I'll bring my own food. I'll be sitting at McDonald's eating a peanut butter and jelly sandwich, and it's just, you know, and then people ask you, "What's Crohn's?" and you try to explain it to them, and you know they have no idea what you're talking about. But yeah, the two worst parts is no one knows you have it, and majority of people don't even know what it is. So yeah, I guess we'll go ahead and move on to the symptoms of Crohn's. The symptoms, like the main symptoms, are You feel a ton of pain when you have to use the bathroom, and you go to the bathroom a lot, which correlates with weight loss. You lose a ton of weight when you get Crohn's, which you're probably saying, that's a good thing. It's not. I lost 30 pounds when I first got it. I was unbelievably skinny, and that gives you low energy and fatigue, and it really is not something that you want to deal with. I didn't mention all the symptoms, but those are just the first ones that popped into my head. And some of the worst things about it is like the lack of energy, and you're always fatigued. I mean, I'm in remission right now, so I'm as normal as you can feel with Crohn's, and I still feel a lack of energy all the time. It's just, it's really annoying. It's hard to be enthusiastic about a lot of things. You're just low on energy. And a lot of people do get depressed when you have Crohn's, which you shouldn't. There are worse things out there. You could have cancer, you could not have an arm. I mean, there's other problems out there that other people have to deal with. Don't get all depressed and, you know, cover yourself in sorrow and stuff. It's life. Things happen. Just move on. I guess some of the last things I wanted to mention: Crohn's is not curable, so obviously you're stuck with it for life, but it's not going to cause you to die early. You're just going to spend an entire life managing your symptoms. Um, I don't think there will ever be a cure during my lifetime. People have hopes about it, and I see all this talk about it. I personally don't think there'll be one, but you know, someone can prove me wrong. I would— I mean, I would literally work a job for an entire year if I had to, to get enough money to pay to get rid of my Crohn's. I mean, I'd spend like years just to get enough money to have a treatment or whatever done to get rid of my Crohn's if there was an option. Another thing is healthcare, anything medical related, it's always really overpriced. So I'm actually gonna have to get a job with a big corporation or anything with good medical insurance because I'm not gonna be able to pay for this on my own. Uh, that's something that a lot of people that I should have mentioned earlier with Crohn's have to struggle with is the medical expenses Expenses, it's really, really, really expensive. And if you don't have good medical insurance, I have no idea how you'd be able to afford it. I'm definitely gonna have to get a job based on their medical insurance just so I can pay for all my stuff that I have to with Crohn's. But that's pretty much everything dealing with Crohn's. I guess we could tell you a little bit about the medical sides of things, like treatments. I'm currently on Remicade, as I already stated. So I go in every 5 weeks, they put a needle in my arm, and then I sit there for 3 hours as medicine's pumped into my veins. And then I feel good and it slowly wears off. It's like winding a clock. And then after 5 weeks I start to feel bad again. I go and get it, I feel good again. So obviously when I do cheat on my diet is right after I get my medicine because that's when, um, I don't— that's like when it won't affect me as much because I'll have so much medicine in me. But when I'm 5 weeks away from my medicine, I can't afford to cheat because there's like not much left still running through my veins, or I don't really know where the medicine goes. So, uh, yeah, uh, I guess I could also touch on the diet a little bit. Uh, obviously the biggest thing with Crohn's is diet, and it's different for everyone, so I, I don't really feel the need to tell you what I eat because you shouldn't mimic what I eat if you have Crohn's, because like I said, it's different for everyone. But the biggest thing is just drink water. Uh, there's a lot of stuff in like soft drinks and like even Gatorade and Powerade. You don't really need any of that. Like, all you really need to drink is water, and I think that's one of the biggest things for me If you just give up everything else, because they have so many artificial flavors and things in it, you know, to change the color and all this other stuff. You don't need any of that. If you can just only drink water, that will probably be a big help to you and Crohn's if you're, you know, having problems. If what you're eating right now is working for you, then just disregard that. But that's pretty much everything. This is kind of a long video, but hopefully I covered everything I wanted. I didn't really think about what I was going to say, you know, beforehand, so Hopefully I covered everything, and if you have any questions, just ask in the comments. I mean, I've had it for a couple years now, so I should be pretty qualified to answer any questions about Chronos. So that's pretty much everything. Let me know what you think.
