Treating children with IBD
This information has been provided with kind permission from Crohn’s and Colitis UK – a nationwide charity committed to providing information and support, funding crucial research and working to improve healthcare services for anyone affected by Inflammatory Bowel Disease.
For further information please download the full patient publication from Crohn’s and Colitis UK
WHAT CAUSES IBD?
Although there has been much research, the cause of IBD is still uncertain. Many researchers now believe that IBD is caused by a combination of factors: the genes a person has inherited which may make them more likely to develop IBD, and then an abnormal reaction of the immune system (the body’s protection system) to certain matter in the intestines, possibly triggered by something in the environment. Viruses, bacteria (including those that live normally in our intestine), diet and stress have all been suggested as environmental triggers, but there is no definite evidence that any one of these factors is responsible.
Research is continuing, especially into genetic (inherited) factors. It has been found that parents with IBD are slightly more likely to have a child who develops IBD. How likely seems to vary with the condition and is also higher in some population groups. Estimates vary but research suggests that in general, if one parent has UC, the risk of their child developing IBD is about 2%. That is, 2 out of 100 children born to couples where one parent has UC might be expected to develop IBD at some point in their lives. For Crohn’s the risk is generally thought to be between 5% and 10% – that is, for every 100 people with Crohn’s having a child, 5 to 10 of the children may develop IBD. If both parents have IBD, the risk can rise to above 30%. Even with genetic predisposition – an increased risk because of a person’s genes – additional factors are needed to trigger IBD.
Nothing you have done or not done will have caused your child to have IBD.
WILL MY CHILD GET BETTER?
Currently, IBD cannot be cured, in other words taken away completely, but a lot can be done to minimise its effects and help your child live a normal life. Once treatment is started, many of your child’s symptoms should improve within a few weeks. Although there may then be periods of relapse when your child might be ill with IBD, there will probably be periods of remission when their symptoms more or less disappear. Most children with IBD can continue to go to school and take part in sports and other interests. Many then go on to further education, training or employment, and successfully have families of their own.
WHAT KINDS OF TREATMENT ARE THERE?
IBD affects everyone differently, but the aim of treatment is to make your child feel better, and then to keep their symptoms under control. There are several kinds of treatment for each condition that may be used one after another, or in combination, at the same time.
Crohn’s Disease may be treated with specialised liquid diets (also known as nutritional therapy or enteral feeding), drugs, surgery, or a combination. In children with Crohn’s, nutritional treatment is often tried first as studies in children have shown that it is as effective as steroids (see drugs used below) and has fewer side effects. It usually involves taking a liquid diet, instead of food, for a number of weeks. The majority of children respond very well to this nutritional treatment, and it can often mean that steroid use can be reduced or even avoided. Your child may then go on to long term medication to help keep their condition under control.
Ulcerative Colitis and IBDU/Indeterminate Colitis are more likely to be treated by drug therapy, although for some children, surgery may be needed. Unlike Crohn’s, Ulcerative Colitis cannot be treated with a liquid diet, although supplementary nutritional drinks are occasionally recommended to provide extra energy (calories) for growth.
HOW DOES DIETARY TREATMENT WORK?
Many children with Crohn’s Disease will be treated, at least initially, by being put on an exclusive liquid diet. This involves drinking a specially prepared liquid ‘food’, such as Modulen IBD or Elemental 028, instead of normal food, usually for a period of about 6-8 weeks. These products are easily digested and also provide all the nutrients necessary to replace lost weight and help your child grow properly.
Once prescribed, these specialised diets should be obtainable at your local pharmacy. They usually come in powder form, to be made up into a drink with water. Most are available in several flavours and trial packs may be available. Some brands also come in ready-to-drink cartons.
The drinks should be spread out through the day. If your child has difficulty drinking a sufficient quantity, they may find the diet easier to take through a nasogastric feeding tube (a fine tube passed through the nose down into the stomach). However, it is usually worth trying to find a flavour or type of liquid food that your child is able to drink without the need for a nasogastric tube. Your dietitian or IBD team should be able to help with this. Once in place, a nasogastric tube should not stop your child going to school, college or taking part in all their usual activities, although some children may feel self-conscious about the tube and it may be worth talking to teachers in advance.
The time that the actual feed is given can be organised to suit your child’s daily routine, and some of it can be given overnight while your child is asleep.
After treatment, foods are gradually re-introduced, generally over several weeks. Your child’s IBD team will advise you on how to do this. As a parent, you may worry that it will be difficult for your child not to have solid foods for this length of time. However, try to remain positive because this is usually a very effective treatment.
For some children with Crohn’s Disease, supplemental nutritional treatment (taking a liquid diet as well as food) or another period of exclusive enteral feeding may be recommended during follow-up treatment, to improve growth and help keep the condition under control.
IS A SPECIAL DIET HELPFUL AT OTHER TIMES?
There is no evidence that other special foods or extra vitamins are helpful in children with IBD, nor that avoiding specific foods helps everyone. However, if you find that a particular food appears to upset your child, it is sensible to avoid it after consultation with your doctor or dietitian. For example, some children feel better if they avoid spicy food or drinking large amounts of milk. Your IBD team will give advice about a well-balanced and nourishing varied diet.
Occasionally, your doctor may prescribe vitamin or mineral supplements, such as vitamin D or iron, if the body stores are low. Our booklet, Food and IBD, gives further information on how food affects IBD and suggestions for healthy eating with UC and Crohn’s.
HOW CAN I TELL IF MY CHILD IS DEVELOPING A RELAPSE?
The symptoms of a relapse or flare-up may be slightly different from those your child showed when first diagnosed with IBD. If your child has a persistent tummy ache, fever, vomiting, diarrhoea, blood in the stools, weight loss or general ill health, or if you are concerned in any way, you should consult your doctor or IBD team. The most important thing you can do to help prevent a relapse is to encourage your child to take their medication regularly. There is also some evidence that continuing a partial liquid diet, in addition to eating a balanced diet, may have a beneficial effect in children with Crohn’s Disease, and help to reduce the risk of a relapse. Some children’s symptoms may be made worse by stress, and they may need extra support, for example, around exam time.
For more detailed information please download the full patient publication from Crohn’s and Colitis UK
© Crohn’s and Colitis UK 2017