How do we know the disease is controlled?

Feeling better is the start of the journey; confirmation comes from tests

• Symptoms
• Tests
• Endoscopy

Feeling better alone is not enough

More than just a feeling

Symptoms can disappear while inflammation carries on silently inside the bowel. So we rely on measurable signs to make sure the disease really is calm.

Silent inflammation can, over time, lead to complications such as narrowing (stricture) or needing surgery.

Levels of disease control

Treating to a target

• Better symptoms — regular bowel movements, no blood, and less pain
• Better test results — lower inflammation markers in the blood and stool
• Healing of the bowel lining — confirmed by endoscopy or scans, depending on where the disease is
• A normal life without steroids — getting back to daily activities, and normal growth in children

These targets are based on international recommendations for the 'treat to target' approach.

Reassuring signs

What you notice

• No more blood in the stool
• Number of bowel movements close to your usual
• Pain gone and more energy
• Stable weight and better appetite

These are important signs, but on their own they do not confirm that the inflammation inside the bowel has settled; so we add tests.

Markers we monitor in clinic

What we measure

• Stool calprotectin — a protein that rises with bowel inflammation; it helps with follow-up without needing an endoscopy every time
• Blood tests — the inflammation marker 'C-reactive protein (CRP)', haemoglobin, iron, and albumin
• Bowel ultrasound — a quick, radiation-free scan that shows the thickness of the bowel wall and how active the inflammation is
• Endoscopy — the most accurate way to see the lining healing; it is done at times your doctor decides

Healing of the bowel lining

The longer-term goal

When the bowel lining heals, the chances of the disease flaring again, of hospital admission, and of needing surgery go down.

Your doctor sets the right target for you based on the type and location of your disease and your general health.

• Before: inflamed lining
• After: healed lining

If the target is not reached

The next step

• Adjusting the dose or the interval between doses
• Measuring the drug level in the blood — for some biologic treatments, to find the reason for a weak response
• Switching to another, more suitable treatment
• Looking for other causes — such as not taking treatment regularly, an infection, or smoking

Adjusting the plan early is better than waiting until complications appear.

Disease control: the summary

Key messages

• Controlling the disease means more than symptoms disappearing
• Calprotectin and blood tests are key monitoring tools
• Healing of the bowel lining is a long-term goal
• Follow-up continues even during calm periods
• The plan is adjusted if the target is not reached

Contact the clinic if you have:

• Blood in the stool coming back
• New or worsening tummy pain
• A missed test or endoscopy appointment
• More frequent bowel movements
• A high temperature or weight loss
• No improvement after a change in treatment

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