“Positivity Breeds Acceptance”: Jess’s Crohn’s Disease (IBD) Story
Jess was diagnosed with Crohn’s disease, a kind of inflammatory bowel disease, when she was just eight years old. She began experiencing unexplained stomach pains and a noticeable loss of appetite, even when offered desserts that she loved. A sudden weight loss signaled to her family that something was seriously wrong. After a series of tests, especially with a family history of Crohn’s, the diagnosis was confirmed. Now, 22 years after receiving an ostomy bag, watch Jess’s story.
Interviewed by: Nikki Murphy
Edited by: Chris Sanchez
Initially, Jess managed her condition with standard medications and a highly specific diet — her mom even peeled strawberries to make them safe to eat. Life seemed relatively stable until an unrelated bout of stomach flu sent her health into a downward spiral. Her body couldn’t keep up despite steroids, biologics, and even total parenteral nutrition, a process of delivering nutrients intravenously, skipping the digestive system. Eventually, Jess developed toxic megacolon, a life-threatening complication from her Crohn’s disease that left no option but emergency surgery to remove her colon and part of her small intestine.
Facing ostomy surgery as a teenager was daunting. But Jess vividly recalls the moment her surgeon’s wife, who also had an ostomy, visited her in the hospital. Dressed in stylish black jeans, she challenged Jess to find the ostomy bag, and Jess couldn’t. This encounter shattered the stigma Jess had unknowingly built up, showing her that life with an ostomy could still be full and vibrant.
Recovery wasn’t easy. Jess had to relearn basic functions, from swallowing food to walking. She also navigated the complexities of ostomy care, experimenting with different products to find the perfect fit. Adjusting to a new body image during her teenage years, especially with 2000s fashion trends like low-rise jeans, added another layer of challenge.
But Jess was resilient. By the time she graduated from high school, she had found her confidence, made meaningful friendships, and even taken bold steps in Crohn’s disease advocacy. Her senior PR project on ostomy awareness laid the groundwork for Uncover Ostomy, a campaign that continues to educate and support countless individuals today.
Jess wants everyone to know that positivity breeds acceptance. She believes that approaching life and her ostomy with confidence has not only empowered her but also influenced how others perceive it. Her courage to share her authentic experience has made her a beacon of hope for many facing similar health challenges.
Watch Jess’s video and delve into:
- How she found her confidence after life-altering surgery
- The unexpected moment that changed Jess’s view on her ostomy
- From hospital bed to advocacy: her inspiring Crohn’s disease story
- How Jess relearned to eat, walk, and live fully after surgery
- The real challenges and triumphs of living with Crohn’s disease
- Name:
- Jess G.
- Age at Diagnosis:
- 8
- Diagnosis:
- Crohn’s Disease (a type of inflammatory bowel disease or IBD)
- Symptoms:
- No appetite even when offered a favorite dessert
- Weight loss
- Treatments:
- Steroids
- Blood transfusions
- Biologics
- Surgeries: colectomy, small bowel resection, colostomy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
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Symptoms: No appetite even when offered a favorite dessert, weight loss
Treatments: Steroids, blood transfusions, biologics, surgeries (colectomy, small bowel resection, colostomy)
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Symptoms: Overactive bowel, heavy cramps in stomach area, abdominal pain
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Alli R., Ulcerative Colitis
Symptoms: Blood in stool, unexplained weight loss, stomach pain, constant defecation
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Sarah A., Ulcerative Colitis
Symptoms: Bowel irregularity, severe stomachaches, blood in stool
Treatments: Surgery (ostomy surgery), steroids, anti-inflammatory medication (mesalamine), biologic therapy
Dana D., Crohn’s Disease (IBD)
Symptoms: Abdominal pain, diarrhea, blood in stool
Treatments: Surgeries (colon resection, total proctocolectomy with end ileostomy,
abdominal perineal resection, myocutaneous flap), steroids, biologic therapy
Tina A., Crohn’s Disease (IBD)
Symptoms: Irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD), constipation, red eyes (allergic conjunctivitis), joint pain, weight loss, frequent bowel movements with bleeding
Treatments: Surgeries (total proctocolectomy, permanent ileostomy, J-pouch which was later reversed due to complications, nearly two dozen additional surgeries related to Crohn’s complications)