Information for Caregivers

Whether you are a parent, partner, family member or friend to someone with inflammatory bowel disease (IBD), you can play a valuable role in helping them manage the condition and get on with life.

Here are a few important things you can do to help.

• First things first: Understand what you’re dealing with – what is IBD, what the symptoms are, which parts of the body are affected, etc. The more you learn about it, the more understanding you will be about what this person close to you is going through
• Think about how the condition may affect your loved one
• Speak to your loved one about how they feel and what support they may need

A good place to start your information search is right here on this site – click to find out more about:

• Learn About IBD
• Managing IBD
• IBD useful links

IBD in children and young adults – information for parents

We know that it is not easy for you to hear that your child has a chronic disease. You undoubtedly have many questions that you want answered. Some questions you can ask easily, others it will be more difficult to find the words for.

Remember that your doctor is used to dealing with such concerns and is best placed to explain the specific issues for your child. In the meantime, here are some common concerns:

How common is IBD in children?

IBD is rare in children. Some studies suggest an increase in the number of children with IBD, but others say there is no change.^1,2

How would I know if my child has IBD?

Sometimes it can take a while to realise that something is wrong. Often the disease develops so slowly that the child gets used to the symptoms. So it can be you, the parent, who discovers that something is wrong. You may notice bowel symptoms (stomach pain, diarrhoea (Learn more about symptoms of IBD))  or that your child is not growing as fast as their friends, or maybe puberty seems to be delayed. You may also notice your child needs to go to the toilet very urgently or that they take a long time.

Remember not all the symptoms of IBD are related to the digestive system. Your child may also feel tired out and seem to have lost their appetite.

Will my child be in pain?

Both ulcerative colitis and Crohn’s disease can cause painful symptoms. Fortunately once your child has been diagnosed and has a treatment plan, they should have less symptoms and discomfort.

What is the treatment for IBD in children?

Treatment of IBD in children includes:

• Medication
• Nutritional supplements
• Surgery (possibly)

The goals of treatment are to:

• Manage the inflammation
• Relieve and/or control symptoms
• Correct nutritional deficiencies

Discuss with your doctor what types of treatments would be best for your child and how best you can support him/her.

Some general tips on treatment of IBD in children:

• Choice of formulation: Small children can have problems swallowing tablets. Do not crush tablets without asking your doctor or pharmacist first as some tablets can get damaged this way. Some forms of medicine are also available as mixtures and some tablets can be dissolved in fluid or are available as small grains that are easier to swallow
• Taking medicine regularly: Younger children will need their parents/carers to help them to take their medication. As your child gets older, it is important that they play an active role in managing their condition and learn to take their medicines themselves. But when things are going well, it isn’t always easy to remember to take the preventive medicine. If your child often forgets to take their medicines speak to your doctor to see if there are other treatment options available, as some medicines for IBD can be taken just once daily
• Support with side effects: Steroids (e.g. prednisolone) are often used for IBD flare-ups. Although these are very effective, the side effects (increased appetite, rounder face and stomach,  mood swings, tendency to sweat and spots) can make them very unpopular especially with teenagers. It is therefore important to remind your child that his or her appearance will return to normal when the treatment has finished. Steroids are generally only used to manage flare-ups, but their side effects mean that they are not often used long term
• Alternative treatments: You may want to try alternative treatments or a special diet. Always let your doctor know what alternative treatment your child is receiving as they may be able to advise you. For example, a special diet for adults with IBD patients may be unbalanced or too low in calories for a growing child
• Vitamins and minerals: A combined daily vitamin and mineral supplement is advisable regardless of whether the disease is active or inactive. Your doctor will let you know if specific supplements are needed

Growth and nutrition

You may be worried about growth and nutrition. In young people with IBD whose IBD began before puberty, it is possible that growth may be affected. Poor food intake may contribute to poor growth. So making sure that your child has good nutritional habits and adequate caloric intake will give them the best chance of growing to their full potential.

What should I do?

Small children generally adapt to a new situation better than we expect. But in puberty especially, children can have difficulty in accepting that they feel different to their friends. It is therefore important that your child is, as far as possible, given the opportunity to live a normal life.

As a parent you have to achieve a fine balance. You have to supervise to a certain extent (is the medicine being taken, are there signs of flare-up of the disease?), while at the same time letting your child participate in social activities as far as possible (sport, travel, parties, etc.) so that the disease does not affect him or her more than necessary.

Children and teenagers prefer openness. This means that teachers and friends (and parents of friends) should know that your child has IBD.  It can be very difficult for the child to talk about the disease themselves. Practice discussion, answer questions and talk openly to your child about how they feel. It might be useful to print off information about IBD so your child can use this if they feel awkward or unable to answer questions.

If your child is very “overpowered” by their disease, it may be helpful to speak to a psychologist and supportive groups with other children and families in similar situations.

If you are taking care of a child or young person you could also help them in various ways:

• Ensure that they are following a healthy eating plan
• Help them during a flare-up by being supportive and maintaining a positive attitude as well as physically taking care of them
• Ensure they are taking the right medication at the correct dose depending on whether they are in remission or a flare-up
• Set up regular check-ups
• Inform their school and parents of friends
• Help your child to find language comfortable to them if they need to explain the condition to others
• Ensure that adequate provisions are made during school trips/holidays

All of this may seem daunting, but there are lots of other parents in similar situations. Patient support groups, where your child can also meet other children like them, can provide a real source of comfort and information.

How you can help

Whether the person you are caring for is an adult or child, you can:

• Listen and lend a sympathetic ear: Be a good listener. give them your full attention and let them express their feelings
• Offer encouragement about how they are coping with their symptoms – this will help get them through times when they are experiencing flare-ups or feeling overwhelmed by their illness
• Ask them what they need from you – and be prepared to give them some space if that is what they need at that time
• Be understanding if they are feeling unwell or tired, are constantly visiting the toilet or have any other distressing symptoms or emotions associated with IBD
• Keep a good sense of humour – it can be helpful to help them see the funny side of things and have a good laugh together
• Get involved and be their ‘second pair of ears’ (if it is your child who has IBD, you would no doubt be doing this already)
• Help them to ask questions during medical appointments and discuss the information covered after medical appointments together
• Offer practical help with shopping, cooking, childcare, etc when they are unwell
• Offer to tell others about the illness so they won’t have to keep explaining it. However, ask your family member or friend if this is okay – they may only want a select few to know the details
• Check out local face-to-face and online support groups that are available to help
• Help and encourage with lifestyle changes such as:
  • Avoid smoking when you are around someone with IBD; cigarette smoke can worsen the symptoms of IBD
  • Eat healthy – a diet with plenty of fresh fruit and vegetables, wholegrains and healthy fats, and avoiding processed foods, will be good for both you and them
  • Avoid foods that trigger symptoms – if you notice that some foods seem to make diarrhoea worse, reduce the amount of these foods in the diet
  • Encourage them to limit alcohol intake, as it can exacerbate a flare-up

References
1: Loftus, E.V. (2004). Clinical epidemiology of inflammatory bowel disease: incidence, prevalence, and environmental influences. Gastroenterology 126, 1504–1517.
2: Benchimol, E.I., Fortinsky, K.J., Gozdyra, P., Van den Heuvel, M., Van Limbergen, J., and Griffiths, A.M. (2011). Epidemiology of pediatric inflammatory bowel disease: A systematic review of international trends: Inflamm. Bowel Dis. 17, 423–439.