I'm a Black girl with an ostomy bag. I never saw myself represented, so I decided to share my story.

• Renee Welsh had a colostomy when she was 32 because of severe Crohn's disease.
• Now, she's built a TikTok following dedicated to representation.

This as-told-to essay is based on a conversation with Renee Welsh. It has been edited for length and clarity.

Since I was 9 years old, severe Crohn's disease has affected every area of my life. Crohn's is about much more than diarrhea. It also involves fever, malnutrition, pain, and fatigue. I experienced all these. At some points, I ate only once a week. I couldn't go out with friends. My weight dropped so low that acquaintances thought I had an eating disorder.

When I was 17, I had surgery that was supposed to put me in remission for seven years. But less than a year later, my severe Crohn's disease was back. I lived in constant pain for 10 years until I made the life-saving decision to have a colostomy, a surgery that opens the abdomen to bring the colon through it and attach a bag to it on the side of the body.

It was a life-or-death decision

By the time I was in my early 30s, I was extremely weak. Doctors were concerned my heart would give out because I was so malnourished.

My only hope was to have a portion of my colon and rectum removed. Instead of me pooping normally, waste would exit my body through an ostomy bag. I'd have to wear it constantly for the rest of my life.

Even though I knew there was no other option, that prospect was daunting. I wanted to meet someone and fall in love, and I didn't know if I could do that with the bag. But I knew for sure that I wouldn't be able to do that if I didn't get the surgery.

Growing up, I kept my Crohn's disease secret from family and even friends. There's a stigma to being sick, especially when you're Black. I wasn't ready to have a label like "disabled."

But after my surgery, I realized that talking about my disease was going to be unavoidable. I started my Instagram account as a way to guide myself through the learning curve of life with an ostomy bag. Then, my story took off on TikTok. I began building a community of people living with chronic diseases like Crohn's while chasing their best lives.

Now, I carry myself differently

There's not enough representation for Black people and other people of color in the world of chronic disease and disease advocacy. People with chronic diseases are isolated. When I was young, I wanted so badly to see someone who looked like me and was living a life that was like mine. Recently, I had the chance to work with Buoy, a hydration company with a chronic-illness-support program, on a film about young adults living with chronic diseases. I imagined my younger self, seeing herself reflected in a film like this.

People of color with ostomy bags comment and message me all the time. I've been able to shed light on this issue for my community and bring hope to people who are facing the same type of challenges. In the Black community, health struggles aren't often talked about, but I'm working to change that.

My family and friends may not have known about my condition when I was a teen, but they could tell something was wrong. Now, they say I carry myself differently. That's the biggest reward. I thought getting an ostomy bag would be the end of my life. Instead, it's given me my life back.