Treatment is not only about symptoms

The goal is to calm the inflammation and protect the bowel in the long term

• Calming inflammation
• Protecting the bowel
• Quality of life

What you feel is only a small part

The iceberg picture

• Symptoms
• Inflammation inside the bowel

Symptoms are like the tip of an iceberg. The inflammation that may carry on inside the bowel wall is the larger part, hidden below the surface.

Treating the symptoms alone is like removing the tip while the larger part remains.

What does ongoing inflammation cause?

Why do we treat the inflammation?

• Narrowing of the bowel — ongoing inflammation can lead to scarring (fibrosis) and narrowing, especially in Crohn's disease
• Fistulas and abscesses — caused by inflammation spreading through the bowel wall
• Hospital admission and surgery — more likely when the disease stays active
• Bowel (colon) cancer — the risk rises the longer and more extensive the colitis is; controlling inflammation helps reduce it, and surveillance colonoscopy picks up early changes

Not every patient gets these complications, but calming the inflammation makes them less likely.

Treating symptoms or treating to a target?

Two different approaches

Treating symptoms only:

• When is treatment changed? Only when symptoms get worse
• How do we measure improvement? By how the patient feels alone
• Steroids: used repeatedly
• Result: the disease may progress silently

Treating to a target:

• When is treatment changed? When the targets are not met, even if symptoms have improved
• How do we measure improvement? With symptoms, tests, and endoscopy or scans
• Steroids: for short periods only, avoiding dependence on them
• Result: a better chance of protecting the bowel in the long term

The goals of modern treatment

Clear targets

• Fewer symptoms and a better life — getting back to work, study and daily activities
• Calm test results — lower inflammation markers in the blood and stool
• A healed bowel lining — confirmed by endoscopy or scans
• Preventing complications — and reducing the need for hospital and surgery

Your doctor agrees the right targets with you and when to check them.

Why should I continue treatment when I feel well?

A common question

Feeling better is usually the result of the treatment itself. Stopping it without advice can bring the inflammation back, sometimes more severely, and the medicine may work less well when you restart it.

Any change to, or stopping of, treatment should be a shared decision with your doctor.

A partner in your treatment plan

Your role

• Take your treatment regularly — even when symptoms improve
• Keep your test and endoscopy appointments — they are what confirm that the inflammation has really settled
• Report any change early — such as blood returning, pain, or more frequent bowel movements
• Discuss your goals with your doctor — such as work, study, travel and planning a pregnancy

The goal of treatment: the summary

Key messages

• Symptoms are not the only measure of disease activity
• Calming the inflammation protects the bowel in the long term
• Clear targets are set and progress towards them is measured
• Do not stop treatment when you feel better without advice
• Regular follow-up is part of the treatment

Contact the clinic if you have:

• A wish to stop or change your treatment
• Symptoms coming back, even mild ones
• Plans for a pregnancy or long travel
• Difficulty sticking to treatment, or side effects
• A missed test or endoscopy appointment
• Questions about your treatment goals

If you have heavy bleeding, severe pain or a very high temperature, go straight to the nearest emergency department.