One day I decided to get on the scale. No idea why I was eight years old. I remember laying on a couch trying to watch Magic School Bus but I couldn't finish the episode because I kept falling asleep.
I noticed that I had lost five pounds and I was eight years old so my mom took me to my family doctor who then sent me to SickKids. I was just constantly getting sick. I was throwing up. I couldn't stay awake. And then I had a couple of tests done.
Really uncomfortable tests. I had to drink barium which is an x-ray liquid and they also had to give it to me the other way. So pretty much my parents were just like something's wrong.
Brought me to McMaster. I was admitted to the hospital for a week. To me it felt like it was like at least three months but it was actually just a week apparently. And it was just a week of going through tests. And then they took x-rays and basically were like... They kind of just were like...
You have Crohn's. My name is Ryan. I'm third year student at Ryerson University University in the film program. My name is Jessica Grossman and I'm the founder and spokesperson for Uncover Ostomy, an awareness website focused on changing the negative stigma around ostomy surgery. I was first diagnosed with Crohn's when I was four and a half. I was first diagnosed with Crohn's at the age of nine but I started getting symptoms at eight years old. So when I tell people I have Crohn's they usually have no idea what I'm saying or they like repeat it like a good three or four times to try and be like Crohn's? Crohn's? Like what is that? It's a digestive disease that can affect anywhere in your digestive system and pretty much it causes you to not be able to digest certain foods.
You can't absorb different nutrients in these foods and basically if you eat these things it'll upset that particular part of your digestive system that's actually being affected and it will make you sick. When I first started telling people I had Crohn's I was really young cause I was diagnosed when I was nine and everyone was really young that I knew obviously so people didn't really..... Like they kind of understood but they just knew that I was sick all the time and it was like whatever. When I had ostomy surgery I was a little bit older. I was 13 and I had gone to a new high school. I had just started high school with people I'd never met before like no one I knew from school before went to this high school so I basically started from scratch and just decided to tell people basically I have Crohn's and my intestines have been attacking me from the inside out so in order for me to be healthy they had to remove that piece of intestine which was for me like... Like longer than this much you probably can't even see it in frame but a lot of intestine and because they took so much of it out they couldn't attach my system back together properly because it would be too short so what they do is they reroute your intestines to stick out of your stomach and then you have to wear a bag on top. Yeah, I always have to be careful about what I eat, when I eat.
So it's always like in the back of my mind I guess. So the foods that I can eat this list changes a lot and often which is unfortunate. I mean the thing with Crohn's is like you never know what you can't eat until you eat it.
I cannot eat guacamole learned that over the summer. The main thing is like if I tell people what I can't eat it's corn, raisins, popcorn, nuts and seeds. When I was first diagnosed with Crohn's I was given the same list. Like you can't eat nuts, you can't eat seeds, you can't eat like stringy vegetables, you can't eat popcorn, you can't eat anything fun. How does Crohn's affect me? Um it depends on when you're asking me I guess. Like when I was first diagnosed it affected me you know a little bit cause I got stomach aches and I couldn't eat certain things or I didn't want to eat and I lost some weight and then as the disease got worse I stopped being able to move or like you know I was always in the bathroom so it kind of started to take over my life to the point where I was in the hospital for two years and didn't really have a life and I was hovering over the edge of like being alive and being dead so you know it kind of took over all of my life. So in 2010 all of my medications stopped working and it was at a point where my doctors needed to figure out something that would work and control all of my symptoms and flare-ups. Unfortunately it took about a year for that to happen and during that time I went from about 125 pounds to just under 90 pounds.
I pretty much just looked like skin and bones there was really nothing to me and I was really at the point of life and death. So obviously right now Remicade is what's working for me. That being said your body starts to get used to different medications... Might not always work..
Things can change. So eventually I know there will probably be some other kind of medication that I have to take. I know it could get to a point where I'll have to go in for surgery.
Those are all the things that are kind of like in the back of my mind all the time. The things you know might happen but you're not going to necessarily like dwell over all the time. Now it doesn't affect me today.
Like I have a job. I have you know a career. I have a lot of things that I'm working on but it does affect me as a whole in the sense that like I can get sick with other things a lot easier like I can get a cold a lot easier.... I don't ... Sometimes I don't have a lot of energy because I'm anemic because I don't have a colon which is also part of having Crohn's you get anemia so like I work really hard to work out and be fit but just some days I just can't. Honestly, Crohn's is like the most inconsistent thing. There was a point in the last year, I was just so upset and frustrated and it affected my Crohn's.
Immediately after it happened ... Like my stomach just like clenched up and when that happens... Like I could not stand up like I had to lie down. Lifestyle-wise definitely Crohn's could affect me a lot in terms of there might be a time where I can't do what I want to do because I have to worry about being able to pay for medication. I have to work in this area like I can't just like start working at the company I want to work for. Obviously there's a lot of jobs in Canada but there's also a lot of jobs outside of Canada and the company I want to want to work for in particular is in the states.
Problem with that they don't have healthcare and the medication I'm on I have to take every eight weeks and it costs over thirty-six hundred dollars. I'm going to say that's somewhere like twenty... Twenty grand or more a year. I think growing up with it taught me a lot and like kind of shaped me into who I am today. I know I have something that has the possibility of setting me back but at the same time I don't want to let so it kind of like gives me a drive to do what I want to do. You don't have any stories. Tell me like a fun Crohn's story! I have so many ridiculous stories.
I don't have that many ridiculous stories. I've been really lucky cause like... Like I said from like 98 to 2010 my meds and everything worked.
So you don't have any like crazy... I don't have anything like insane like this one time I ate a tortilla chip and then I threw up for seven days type of story? No, not really. I've been really good with like not eating things because like I've never had a time when I've been able to actually risk having those times off. I have a boring Crohn's life. I mean I think that's a good thing..
But you're also missing like half the fun of Crohn's. Like if there was a fun side to Crohn's.. But it might be different too because you have an ostomy so like there's more things that can happen.... I guess I have a wider range of stories. Yeah. I have so many stories. People ask me all the time if there's a cure now would you take it? I don't know because I'm still ... Like I still don't have enough intestine so it wouldn't even really..
I need them to like 3D print me some more intestine which might actually happen. Could be like 15 years from now you could have a little robotic intestine. I don’t know if it’s robotic. Or like made out of weird plastic things. Yeah, so maybe but like.. I don't know... It works. Yeah for me I was like if it was one of those things where it’s like you could just be cured now but you’d still have the same experience I was like yes because it would take away a lot of those limitations like I'd be able to travel to places I want to go to and like gives you a bit more freedom than what you want to do but also.
And you could eat tortilla chips. I could. I could eat strawberries and like corn and peanuts. The three things I loved before I was diagnosed are the things I can't eat. But yeah if it took... Away the experiences though I don't think I would because it's like I don't know where I would be or who I would be without the experiences that I've gone through.
Yeah. And like the community and people I've met through it I think its opened a lot of doors and like opened up my like mind and like eyes to a lot of things. It's just like no I don't think I'd want to change those experiences. They say the sails depend on the height of the waves and they say we can't see that far because of the haze and they say it's getting warmer and it's just a phase but I won't believe them.
I won't believe them. They say that were not perfectly meant to be but if we don't fall crashing then we'll never see if we're a part of everything that will subside cause I would love to try.
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