What should you know about refractory Crohn's disease?

Crohn's disease causes inflammation in parts of the digestive tract. When symptoms, inflammation, or complications continue despite an appropriate treatment plan, clinicians may describe the disease as refractory. This does not mean that no options remain. The next step is to check whether inflammation is truly active, whether medicine is being absorbed and taken as intended, and whether another problem is adding to symptoms.

Possible features include ongoing abdominal pain, diarrhoea, weight change, tiredness, fever, or blood in the stool. Symptoms alone cannot show how much inflammation is present, and a person can have active disease without severe pain. A GP or gastroenterology team may review symptoms, medicines, examination findings, and test results.

Arrange a review with your GP or gastroenterology team, taking a complete list of medicines, supplements, and recent symptoms. Ask whether blood tests, stool testing, or imaging is needed to assess inflammation, anaemia, infection, or medicine effects. A blood test can form part of this assessment. Do not stop steroids, biologic medicines, or other prescribed treatment suddenly unless the prescribing clinician tells you to.

Keep a simple record of bowel frequency, pain, temperature, food triggers, and any blood. Drink enough fluid, follow the eating plan given by your clinical team, and seek advice before using anti-inflammatory pain medicines or anti-diarrhoeal medicines.

Seek urgent medical help for severe or worsening abdominal pain, repeated vomiting, a swollen abdomen, inability to pass stool or gas, heavy rectal bleeding, fainting, confusion, or signs of dehydration such as very little urine. Contact your care team promptly for persistent fever, rapidly worsening diarrhoea, or a marked decline in strength. These symptoms can signal a complication or infection and need assessment rather than home treatment.

Ask: How will we confirm whether inflammation is active? Could infection, a narrowing, or another condition explain these symptoms? How will the treatment plan be adjusted, and what warning signs should prompt same-day help?