What's Your Story with Jaime & Stan

Living with Invisible Illness: Finding Life Beyond Crohn's & UC with Simone Leo | Ep. 94

Episode Summary

When a sudden diagnosis of ulcerative colitis at 19 disrupted her life, Simone Leo found herself facing years of debilitating pain, severe weight loss, and the isolating anxiety of managing an invisible chronic illness. In this raw and deeply vulnerable conversation, Simone reveals how a misdiagnosis led to emergency surgery, the complex emotional reality of navigating a temporary ostomy bag as a newlywed, and how she ultimately reclaimed her life to complete half-marathons and build a family through surrogacy. Her story offers a powerful look at the courage it takes to advocate for your health when your body feels like a warzone.

Episode Notes

When a sudden diagnosis of ulcerative colitis at 19 disrupted her life, Simone Leo found herself facing years of debilitating pain, severe weight loss, and the isolating anxiety of managing an invisible chronic illness. In this raw and deeply vulnerable conversation, Simone reveals how a misdiagnosis led to emergency surgery, the complex emotional reality of navigating a temporary ostomy bag as a newlywed, and how she ultimately reclaimed her life to complete half-marathons and build a family through surrogacy. Her story offers a powerful look at the courage it takes to advocate for your health when your body feels like a warzone. 

• The Journey to Diagnosis: Simone details her early 20s onset of severe digestive symptoms, navigating the emotional toll of a sudden ulcerative colitis diagnosis, and the crucial step of seeking specialized GI medical care.
• Navigating Misdiagnosis & Surgical Realities: Discovering during surgery that her condition was actually Crohn’s disease rather than ulcerative colitis, leading to an emergency pivot in her treatment plan and surgical outcomes.
• Overcoming the Stigma of Ostomy Bags: A candid, refreshing conversation on living with a temporary ileostomy/colostomy bag, tackling intimacy as a newlywed, and breaking the social taboo surrounding chronic gut health issues.
• The Gut-Brain Connection & Stress Management: Exploring how stress and emotional burnout directly trigger inflammatory bowel disease flares, and the daily morning rituals—from closet meditation to breathwork—used to maintain physical equilibrium.
• Family Planning & Alternative Paths to Parenthood: Navigating high-risk pregnancies with autoimmune diseases, recognizing physical limits, and choosing surrogacy to safely welcome a child.
• Reclaiming Life Through Community Advocacy: How participating in half-marathon endurance walks through the Crohn's & Colitis Foundation turned years of physical isolation into empowerment and community connection.

LISTEN TO THE PODCAST
Apple Podcasts: https://podcasts.apple.com/us/podcast/whats-your-story/id1768048076
Spotify: https://open.spotify.com/show/0aFWnedfyylxVs5vJrD8tY
Amazon Music: https://music.amazon.com/podcasts/3c4c493e-e2f2-4b4b-bfd3-52174caeaf7c/whats-your-story-with-jaime-stan

CONNECT WITH SIMONE LEO
FB messenger: Simone Leo
Instagram: simone.solzleo
LinkedIn: Simone Solz Leo
Others: https://www.crohnscolitisfoundation.org
https://www.livingwithibd.com/
https://teamchallenge.crohnscolitisfoundation.org/home
Book: https://www.goodreads.com/en/book/show/795220.Chronic_Illness_and_the_Twelve_Steps

CONNECT WITH THE SHOW
Instagram: https://www.instagram.com/JaimeSpeaks
Facebook: https://www.facebook.com/JaimeMarcoSpeaks
LinkedIn: https://www.linkedin.com/in/jaimeamarco
Website: https://www.jaimemarco.com
Feedback/Guests: connect@jaimemarco.com