Young people with Crohn’s and Colitis

Key points

  • Sometimes the type of inflammatory bowel disease (IBD) can be hard to diagnose in young people, so treatment will focus on reducing symptoms. 
  • IBD can delay growth in young people but it will catch up over time. 
  • Moving from paediatric care to adult care can be a stressful time for young people and it is helpful to start preparing early.
  • IBD has little effect on life expectancy and most people with IBD go on to lead happy and fulfilling lives.

Children and young people with Crohn’s and colitis usually face the same complications and treatments as adults. However, in some cases the disease can be harder to diagnose and can also get in the way of some areas of development. 

Getting a diagnosis 

Key points 

  • Tests for IBD may not be able to tell if the IBD is Crohn’s disease or ulcerative colitis. 
  • If you have signs of both Crohn’s disease and ulcerative colitis you may get a diagnosis of IBD unclassified (IBD-U). 
  • IBD-U can change over time to become clearly Crohn’s disease or ulcerative colitis. 

Diagnosing inflammatory bowel disease (IBD) can be a difficult process for anyone experience Crohn’s or ulcerative colitis symptoms. A doctor will have to do many tests that will check the gut for signs of inflammation. Tests could be blood and stool (poo) tests, or an endoscopy (where a special camera is used to inspect the bowel). 

In some cases, a young person may have symptoms of both Crohn’s disease and ulcerative colitis. This can make it hard to figure out which type of inflammatory bowel disease is causing the symptoms. The disease will then be called IBD unclassified (IBD-U). If you are diagnosed with IBD-U as a child, it may settle into either Crohn’s disease or ulcerative colitis as you grow older. 

Find more information on IBD unclassified

Common treatments for young people 

Key points 

  • IBD in young people is mostly treated the same way as in adults. 
  • To avoid the use of corticosteroids, exclusive enteral nutrition (EEN) is a diet used to help the bowel heal. 
  • Talking with your IBD team is important to get the right treatment for you. 

Treatments for children and young people with IBD are similar to treatments for adults. They can include medications that: 

  • Control severe inflammation (corticosteroids)  
  • Keep you in remission (no or little symptoms)  
  • Stops the immune system from attacking the body and causing the inflammation  
  • Lowers pain  
  • Give the body missing vitamins and minerals 

Find more information on treatments for Crohn’s disease and ulcerative colitis 

Exclusive Enteral Nutrition (EEN) 

A common treatment used for children is exclusive enteral nutrition (EEN). A child undergoing EEN will be given a special liquid diet that has all their nutritional needs. The diet is much gentler on the bowel than solid food and will help it heal. 

  • EEN usually lasts for eight weeks. 
  • The liquid formula comes in several flavours and tastes better cold. It can even be frozen. 
  • Sometimes the liquid formula can be given through a tube through the nose that goes down to the stomach (nasogastric tube; also known as NG tube). 
  • Solid food cannot be eaten during EEN and extra water needs to be drunk. 
  • The treatment must be completed under the direction of an accredited dietitian. 

IBD and growth 

Key points 

  • IBD inflammation can interfere with normal physical development in young people. 
  • It is common for puberty to be delayed but good nutrition and exercise can reduce the affects. 
  • Bone health can be affected by medication to treat IBD and should be discussed with your doctor if you are worried. 

Crohn’s and colitis can affect physical development in young people like growth (reaching your final height), puberty and bone health. 

IBD can often delay puberty in young people but eventually the body will catch up to normal maturity when it is ready. Some young people may experience: 

  • Reduced height, usually because of active IBD, low nutrition or corticosteroid medication. 
  • For girls, you may notice that your friends’ body shapes are changing and they may be starting to get their periods.  
  • For guys, you may notice your friends’ voices are beginning to get deeper, bodies are getting taller and broader, as well as more muscular and they need to shave their face. 

Delayed puberty is more likely to affect boys than girls. Boys tend to feel left behind in the competition, whereas girls tend to feel worse if they start puberty earlier than their friends as it makes them different from the group. For guys, a medical testosterone boost may be used to help to kick-start your puberty so that your body starts to change. 

Steroid medication used to treat IBD may affect bone health and possibly lead to osteopenia or osteoporosis (low bone density; increased risk of bone fracture). There are a few things you can do to protect your bone health and reduce this risk: 

  • Calcium – include calcium rich foods in your diet 
  • Vitamin D – safe sun exposure or vitamin D supplements 
  • Weight bearing exercises 

Your doctor can give you some directions and advice to make sure your bones are as healthy as possible. They can even do an easy scan of your bones to see if there is any bone thinning. 

Learn more on Complications of IBD