From my brother to me, and now mom - living with Crohn’s Disease

A lot of you already know I have Crohn’s disease. I got my diagnosis when I was 21. And my little brother also has it. He was just 8 when they finally figured it out, but his symptoms started when he was only 5. Back then, our local doctors didn’t do the proper tests. They thought his constant stomach pain was because of his allergies. Nobody even considered doing tests like a colonoscopy or gastroscopy because they didn’t think it was necessary.

Then one day, we were visiting our uncle in Ljubljana, and my brother suddenly started vomiting nonstop. His stomach was bloated, and he was crying from the worst cramps you could imagine. We rushed him to the hospital, and they operated on him immediately. My mom told me he was on the operating table for nearly three hours. His intestine had ruptured. The doctors couldn’t believe how our local doctors had missed such obvious symptoms for so long. They said if we hadn’t been in Ljubljana that day, my brother might not have survived.

At the time, I didn’t understand how serious this was. But when I got my own diagnosis, I started reading about Crohn’s disease. I learned that when the intestine ruptures, it’s a life-threatening emergency with a high risk of death. Even with surgery, 30% of cases don’t survive. Knowing how close I came to losing my little brother broke my heart.

Years later, when I started having similar symptoms—vomiting, diarrhea, horrible stomach pain, and losing weight fast—my mom didn’t hesitate. She insisted on taking me to the hospital. I said I’d go alone because I was an adult, but she wouldn’t hear of it (love you, Mom!).

Unfortunately, we ended up at the same hospital where they misdiagnosed my brother. I explained my symptoms, and you know what the doctor told me? That it's probably just an infection, and I will probably lose some more weight.Can you believe that? They gave me pills for vomiting and diarrhea, but nothing helped. When I got back to Ljubljana, my now-husband saw how bad I was and insisted I get checked at the hospital where he worked. After a series of tests, they diagnosed me with Crohn’s disease too. I started treatment immediately, and I’m so thankful for that because catching it early makes a huge difference.

A few years ago, my brother moved to Austria for work, and he stayed in my apartment. One night, he started having the same severe symptoms he’d had as a child. I was terrified and rushed him to the hospital. He needed emergency surgery again. This time, the doctors had to remove most of his large intestine and give him a stoma. I’ll never forget seeing him in that hospital bed, connected to all those machines, but he smiled at me and said, “I’m fine now.”

It wasn’t easy for him to adjust to life with a stoma, but he’s so strong. Over time, he came to terms with it, and now his quality of life is so much better. He can eat normally, go out without worrying about finding a toilet, and just enjoy life like everyone else.

But why am I writing this now? Because a few days ago, my mom called and told me she’s been diagnosed with Crohn’s disease too. All three of us—can you believe it? I was in shock. My brother and I went to see her right away. We sat her down and said, “Welcome to the club, Mom 😉.”

We know she’s scared because she’s seen what we’ve gone through. But we reminded her that she already knows how to handle this. She’s cooked the right foods for us, supported us through the tough times, and now, she’s been diagnosed early, so they can start treatment before it gets worse. We also made sure she knows she can talk to us about anything—her pain, her fears, her emotions. She doesn’t have to hide how she feels.

Life can throw some unbelievable challenges at you, but we’re a family. We’ll always stick together and support each other. We can face this, overcome it, and keep moving forward.

Life is what it is—you can’t change it, but you can accept it and keep going. Together, we’re stronger.

“It is health that is real wealth and not pieces of gold and silver." – Mahatma Gandhi

With love, @tinabrezpike ❤️