Alexis’ Story

Since I was a young adult, I’ve always been religious. At age 21, I was in a domestically violent marriage with two kids. For six years, I felt stuck.

I suffered a concussion, got kicked out of the house, ran to my family, and lost custody of my kids. He spread rumors about me and said I “abandoned” our kids, which couldn’t be further from the truth. At that point, I empowered myself to say, “I’m not dumb, and I’m not done.”

In December 2019, I got hurt at work. I was rushed to the hospital and had to get multiple xrays, all of which said nothing was wrong, so I was discharged. The next day, I was admitted to the hospital for pain management, yet they still couldn’t find anything wrong. At 30 years old, I was discharged from the hospital with a walker. I couldn’t walk, I was in excruciating pain, and my body was starting to go numb.

In January 2020, I had issues with my bladder and returned to the hospital. I was with the same ER doctor I had before and discovered I had a herniated disc pushed into my spinal cord, which could have been prevented if I had been properly diagnosed the first time. I had to get emergency back surgery, and to this day, I still have lasting damage.

My 2020 journey consisted of relearning how to walk, navigating issues with my bladder, more surgeries, and constant UTIs. I was diagnosed with Cauda Equine Syndrome, which makes you lose control of your bladder, and your body numbs.

In 2021, I went to my GI doctor after I couldn’t get stool out. He said I had to get a colposcopy or I was going to die. In 2019, I had a cystectomy. I was hooked up to a stoma with a drain and continued to get infections.

Alexis’ advice
I have days when I’m not positive and don’t want to do things. It’s incredibly stressful, but my kids (who I’ve regained custody of) are everything to me. If my situation can help somebody, it’s worth it.

I have this rare syndrome, and my ostomy bags are very different from why most people have them (cancer, Crohn’s, etc.). Still, I know I am not alone. You have a bag for this reason, and I have mine for that.


You are not alone. And you are stronger than you know.