Alicia: This disease is really challenging when it comes to self-esteem and body image. If, for example, you have an accident in public, that's something that's really hard to just brush off.
When I was in my 20s, I wore diapers every day, that's something that would make me really angry and sad for a long time. At some point, I just felt, well, this is making my day easier.
Joel: When I first got the surgery done, I was at the time really depressed.
My entire body changed. Honestly, I hated my ileostomy. I hated looking at it. I hated changing my bag. Oh, yeah.
I was like in a deep depression. My family and my girlfriend, they saw that I was depressed. So they started helping me. They told me, you
have to get up, have to get out and start moving.
Marcus: I've always been a fit guy. I train people and I’m a certified nutritionist, and when I had the surgery, and I lost a lot of weight. Being in the hospital for over two months, my body composition changed a little bit. I went from weighing 162lbs down to, I got almost down to about 142, so almost 20lbs.
For me, it has kind of dropped my self-esteem. I have the scars now. Am I going to be able to gain this weight back?
Alicia A.: When I was diagnosed with Crohn's disease and I had lost so much weight that my bones were sticking out, I could hardly walk. People were staring at me. I didn't even feel human. I didn't want to go outside. I didn't want anyone to know about this illness that I had. I felt embarrassed. I felt alone.
At that point, I didn't have any support groups or communities that I could reach out to, to navigate this with someone else. Those first couple of
years, while my body was healing and trying to navigate life with an ostomy as a young teenager, I hated it. I didn't want anything to do with it. I didn't want to change it myself.
Joel: I started getting up every morning and just walking around the neighborhood. Actually, at the time, 2016, it was a Pokemon Go. It's a video game. You can walk around and find Pokemons. That's how I would walk around the neighborhood catching Pokemon on my phone. I felt a lot better just from that walk. It would be an hour, an hour turned into two hours.
After that, then I started getting back into exercise. I would jog maybe a half a mile and then it would turn into one mile then two miles then three miles. Every day I just tried to do things that I did before, just trying to better myself and I ended up the best, I guess, I ever felt even before I had a bag. It helped me a lot.
Marcus: I'm back to being in the gym, being able to do things versus when
I couldn't do things because of the condition.
Alicia A.: When I went into college, one of the video projects was to tell
the class something about you. For some reason, I felt really brave. So I made a little video about my ostomy. When I showed that video in class, they stood up and they clapped for me while I was standing up there shaking.
I couldn't even look at their reactions because I was so afraid to be rejected.
Because of that reaction alone, it changed my life in terms of how I share my story. Now I share it with anyone who will listen.
