Crohn's disease and ulcerative colitis in children: symptoms, growth, liquid diet and treatment

Crohn's & Colitis UK explains that Crohn's disease and ulcerative colitis are the two main types of IBD. Both cause painful ulcers and inflammation in the gut, which affects how the body digests food, takes in nutrients and gets rid of poo. Crohn's can affect any part of the gut from mouth to bottom, often in patches, and can involve all layers of the bowel wall; ulcerative colitis affects the inner lining of the rectum and colon. When only the colon is inflamed in Crohn's it can be called Crohn's colitis, which does not mean the child has both conditions.

Some children have IBD unclassified (IBDU), with features of both, and as they grow the diagnosis may be revisited. Both types can be diagnosed at any age but are less common in very young children and babies, says the charity. NHS pages describe the same two conditions in adults, and the charity says more than 500,000 people in the UK have Crohn's or colitis.

During a flare-up, the charity lists tummy pain, loose or watery poo that may contain blood, mucus or pus, a sudden need to poo, constipation, nausea or vomiting, extreme tiredness, loss of appetite and weight loss, anaemia, fever, and slow growth or delayed puberty, particularly with Crohn's. Parents describe children being pale, tired and emptying their bowels often.

The conditions can also affect other parts of the body. Joint swelling or pain, mouth ulcers (more common in Crohn's), red irritated eyes, skin rashes such as painful red patches on the shins, hair loss and, less often, the liver can be involved. Some of these may be noticed before gut symptoms, according to Crohn's & Colitis UK.

The charity says children with Crohn's or colitis may grow more slowly or not as well as others, may start puberty later and may have weaker bones, and that the IBD team considers growth when planning treatment with the family. The aim is to control the condition while helping the child grow and develop as normal. Speak to the child's doctor with any concerns, the charity advises.

Regular blood tests check for inflammation, infection, low iron and nutrition, and the level of some medicines. Poo tests check for bleeding, inflammation and infection, and a protein called calprotectin that rises when there is inflammation. Endoscopy, using a thin tube with a camera, is done in the children's gastroenterology unit; children are usually offered a general anaesthetic so they are asleep, while older children may be offered a sedative. A colonoscopy may need a low-fibre or liquid diet for a few days and a laxative to clear the bowel beforehand.

Imaging may include MRI, commonly used for the small bowel in children and without radiation, ultrasound and sometimes CT. Crohn's & Colitis UK notes that tests may differ in children under 5 because these conditions are uncommon in very young children and less is known about the best ways to monitor and treat them.

The charity says there is no cure or single best treatment; options are a liquid diet (usually Crohn's only), medicines and, for some children, surgery, and the plan changes over time. A liquid diet, known as exclusive enteral nutrition (EEN), will usually be the first treatment for a child with Crohn's. Leeds Teaching Hospitals explains that it replaces all food with nutritionally complete drinks, sometimes given by a nasogastric tube if the drinks are hard to manage, usually for 6 to 8 weeks from the day the full target volume is reached, and that evidence suggests that when followed strictly it can offer similar remission rates to steroids with fewer side effects. If there is no noticeable benefit after two weeks at full volume other options may be considered.

Solid food is reintroduced gradually under a dietitian's guidance, and a small number of the drinks may continue alongside normal eating. For ulcerative colitis, the charity says a liquid diet is not usually used, although nutritional drinks may sometimes be prescribed to give extra energy for growth. Medicines are chosen by the IBD team, and parents should only give medicines the team has advised.

Crohn's & Colitis UK lists tummy pain that does not go away, weight loss, diarrhoea, blood in poo, needing to poo urgently, nausea or vomiting that does not improve after 24 to 48 hours, and fever as possible signs, and says flare-ups can come on suddenly without an obvious trigger. Families should contact the IBD team if worried, and the team should help create a flare-up plan covering signs, actions and contacts.

The charity says paracetamol may be advised for gut or joint pain but that painkillers such as ibuprofen could irritate the gut and make symptoms worse, so medicines should only be given if a doctor has advised. Regular check-ups continue even when the child seems well.

Most children with Crohn's or colitis continue to go to school and take part in sports and other interests, the charity says, and can go on to further education, work and have a family. Stress can trigger symptoms for some children, so times such as changing schools or exams may need extra support. The charity also encourages parents to look after their own wellbeing, noting that many feel guilty but that nothing is known to have caused the condition that a parent could have prevented. Risk of other family members developing it is higher if a close relative is affected, but most children with a relative who has IBD will not develop it.