In this episode, Luciana Podschun shares her nearly 30-year journey with Crohn’s Disease and talks about everything from international travel, the support and love of her husband over the years, and how she doesn’t let Crohn’s stop her from living her life.
Luciana grew up in Brazil, has lived and traveled all around the world, and now resides in California. When she was first diagnosed as a teenager, she weighed 80 pounds and didn’t know anything about the disease. She wrote to many different U.S. universities searching for information and received a lot of support–one even told her to write to the Crohn’s and Colitis Foundation, which led her to writing to a pen pal and building lifelong friendships (for our young audience listening, pen pals are what we had before social media!).
In the late 1990s, biologic treatments were finally an option for Crohn’s and she began Remicade in 1999. For a few years she did very well, but in the early 2000s her symptoms steadily got worse. Finally, in 2016 the chronic inflammation and risk of cancer was too high that she underwent surgery and became a permanent ostomate. It was an eight-hour surgery with many complications afterward (a retraction, adhesions, obstructions, and stoma hernia) that left her very weak and barely able to walk.
But, the surgery also gave her a second chance at living. She talks about dealing with depression, the emotional struggle, and the encouraging words of her husband who told her, “Luciana, you can’t stop being the same person you’ve always been. I’m in love with the person who is positive, likes to do things, who is brave, and who likes to live her life fully.” This was her second chance at living and after accepting her new body, things got better.
She still doesn’t let Crohn’s stop her from enjoying life. Little by little her old self came back, she began finding ways of dressing up with the bag and feeling sexy and beautiful again. Mr. Crohn (as she calls it) is a part of her journey, but he doesn’t control it. She now shares her story to help other women who are going through the same thing to show that you can live your life, even with a bag. “We never know what’s going to happen tomorrow,” she said, “don’t be afraid to live your life.”