Woman’s Years of Misdiagnosis Revealed Crohn’s Disease After Near-Fatal Complications

A woman’s decades-long struggle with debilitating symptoms initially dismissed as irritable bowel syndrome (IBS) culminated in a near-fatal experience that finally led to a diagnosis of Crohn’s disease. Julie Hughes, now 51, from Clydebank, Glasgow, endured years of pain, misdiagnosis, and medical setbacks before receiving the correct diagnosis.

Years of Dismissed Symptoms

For years, Hughes experienced stomach pain, diarrhea, and fatigue, symptoms frequently attributed to IBS. Despite “countless visits” to her general practitioner, her concerns were repeatedly dismissed as IBS. This led to a delay in receiving appropriate medical attention and a correct diagnosis.

Diagnosis Complicated by Pregnancy

Hughes’ symptoms worsened with the birth of her first child in 1994, leading to significant weight loss. Further investigations continued to yield limited results, with only symptomatic medication prescribed. It wasn’t until 2000, during her second pregnancy, that Crohn’s disease was considered after a lump was discovered in her stomach.

Understanding Crohn’s Disease vs. IBS

While both Crohn’s disease and IBS can cause similar gastrointestinal symptoms, they are distinct conditions. IBS is a common functional gastrointestinal disorder affecting up to one in ten people, characterized by bowel dysfunction potentially triggered by diet, stress, or hormones. Crohn’s disease, however, is an inflammatory bowel disease (IBD) resulting from a fault in the immune system, causing inflammation throughout the digestive tract.

Crohn’s disease is more likely to cause serious complications, hospitalization, and an increased risk of bowel cancer. According to Crohn’s and Colitis UK, IBD affects approximately one in 123 people, or around 500,000 individuals in the UK.

Near-Fatal Complications and Emergency Surgery

The five years following her Crohn’s diagnosis were marked by severe pain, exhaustion, weight loss, and frequent hospital visits. In August 2006, Hughes experienced a critical deterioration in her condition. She began vomiting fecal matter and developed a bowel fistula – an abnormal connection between two organs – and a stricture, or narrowing of the intestine.

Unable to absorb nutrients, Hughes’ body was severely depleted. She experienced cardiac arrest and was placed in a coma, with her family preparing for the worst. Doctors performed two emergency surgeries to remove the damaged portions of her bowel.

Recovery and Living with Crohn’s Disease

Hughes eventually woke from the coma with memory loss, initially unable to recognize her husband or recall her age. She was initially fitted with a stoma, a pouch to collect waste, and required liquid nutrition via IV for nearly two years. She later had her stoma reversed in 2007.

Now living with only 100cm of her bowel, Hughes continues to experience symptoms, including abdominal pain, diarrhea, and fatigue. She manages her condition with medication.

Raising Awareness and Offering Hope

Hughes shares her story to raise awareness of Crohn’s disease and colitis, emphasizing the importance of early diagnosis and treatment. She hopes to provide hope to others facing similar challenges, demonstrating that strength can be found even in the darkest of times. “I have Crohn’s, but Crohn’s does not have me,” she states.