Pourquoi les MICI mettent-elles souvent autant de temps à être diagnostiquées ?

Many sufferers of Crohn's disease or ulcerative colitis report that it took months or even years before they received the correct diagnosis. Why is this the case? And what can be done to get a diagnosis more quickly? In this article, we explain the hurdles on the way to a correct diagnosis and give tips on what to look out for.

You can see a young female. She is sitting on a gray coach and she has stomach pain. IN the Background you can see a bookshelf and a small table with some green plant on it. The picture is symbolic for the diagnosis of inflammatory bowel disease. The Journey to the diagnosis of inflammatory bowel disease is very long. The article where this picture is used tells you some tips to speed up the process for people with morbus crohn or ulcerative colitisi

1. Introduction: The Long Journey to Diagnosis

Many people with Crohn’s disease or ulcerative colitis report that it took months or even years before they received the correct diagnosis. Why is that? And what can be done to speed up the diagnostic process? In this post, we explain the hurdles on the way to an accurate diagnosis of inflammatory bowel disease (IBD) and offer tips on what to look out for.


2. Common Delays in Diagnosing of Inflammatory Bowel Disease

1. Nonspecific Symptoms
Diarrhea, abdominal pain, and fatigue can have many causes – from irritable bowel syndrome (IBS) to stress.
In the beginning, many assume they’re dealing with a harmless digestive issue.

2. Confusion with Other Conditions

  • Irritable Bowel Syndrome (IBS): Without lab tests or a colonoscopy, IBD is often dismissed as a „functional digestive disorder.“
  • Food intolerances: Many try various diets before consulting a doctor.
  • Gastrointestinal infections: Chronic diarrhea is often initially misinterpreted as an infection.

3. Inadequate Assessments by General Practitioners

  • Not all GPs immediately suspect IBD.
  • Often, patients receive general advice like „eat more fiber“ or „reduce stress.“
  • A referral to a gastroenterologist usually comes only after a prolonged period of suffering.

4. Long Waiting Times for Specialists

  • Getting an appointment with a gastroenterologist can take months.
  • Urgency is often underestimated if symptoms are not classified as „acute.“

5. Missing or Incomplete Diagnostics of Inflammatory Bowel Disease

  • Not every doctor immediately orders a stool test (Calprotectin) or a colonoscopy.
  • Without clear lab results, the need for an invasive examination is often overlooked.

3. Crohn’s Disease vs. Ulcerative Colitis – A Comparison

SymptômeCrohn’s DiseaseUlcerative Colitis
Inflammation AreaCan affect the entire digestive tractLimited to the colon
Inflammation DepthTransmural (all layers of the bowel wall)Superficial (mucosa only)
DiarrheaUsually non-bloody, often mushyBloody, mucous diarrhea
PainOften in the lower right abdomenMostly left-sided abdominal pain
Fistulas & AbscessesCommonRare

In addition to digestive issues, IBD patients may also experience symptoms outside the gut:

  • Joint pain (arthritis)
  • Eye inflammation (uveitis)
  • Skin issues such as redness or ulcers

4. IBD or Something Else? Differences from IBS and Food Intolerances

IBD vs. IBS

FeatureIBDIBS
DiarrheaChronic, often with bloodAlternates between constipation & diarrhea
PainMore intense, often localizedDiffuse, no inflammation
InflammationDetectable (blood, stool, colonoscopy)No signs of inflammation
Extraintestinal symptomsPossible (skin, joints, eyes)No

IBD vs. Food Intolerances

  • Lactose/fructose intolerance: Symptoms occur immediately after consuming specific foods.
  • IBD: Symptoms often occur independently of diet, especially during flare-ups.
  • Histamine intolerance: Typically causes headaches, skin flushing, or rapid heartbeat – symptoms not usually associated with IBD.

5. Average Time to Diagnosis of Inflammatory Bowel Disease – What the Numbers Say

Studies show that the average time to diagnose IBD is between 1 and 5 years.
Crohn’s disease typically takes longer than ulcerative colitis due to its more insidious onset.
Many patients have seen multiple doctors before receiving the correct diagnosis.


6. What Can You Do to Speed Up the Diagnosis of Inflammatory Bowel Disease?

  • Document your symptoms: Keep a diary noting frequency of diarrhea, pain levels, and accompanying symptoms.
  • Ask for specific tests: Request a Calprotectin stool test, bloodwork (CRP, ESR, iron deficiency), and possibly a colonoscopy.
  • Consider changing doctors: If you’re not being taken seriously, seek a second opinion.
  • Emphasize urgency: Highlight the significant impact on your daily life to expedite referral to a specialist.

7. Community Experiences: “My Path to Diagnosis”

„My doctor told me it was just stress. It wasn’t until two years later that a colonoscopy was done – and it turned out to be ulcerative colitis.“ – Lisa, 27
„I always had fatigue and diarrhea, but no blood. They said it was IBS. In the end, it was Crohn’s disease.“ – Jonas, 32


8. Conclusion: Awareness and Persistence Help in the Diagnosis of IBD!

An IBD diagnosis often takes a long time because symptoms are misunderstood or downplayed.
Those who document their symptoms and actively request specific tests can shorten the waiting period and receive targeted treatment sooner.

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