Children with IBD (Parents Guide) Part 2 - Living with IBD

If you have a child with Inflammatory Bowel Disease, it is natural at times to feel isolated and worried about how you will cope, especially when your child is first diagnosed. It may help to bear in mind that:

• while your situation is unique, you are not alone - there are thousands of other parents in a similar situation with similar experiences and concerns;
• nowadays there is a good chance that these conditions can be kept under control. The aim of medical treatment is to reduce and limit the number of times your child’s bowel is inflamed, so that he or she can get on with everyday life with as little disruption as possible.

This series of articles is taken from the Crohn's and Colitis UK booklet IBD in Children: A Parent's Guide and has been produced to help you understand your child’s condition and the treatments that may be used. It also looks at some of the more general concerns that you may have as a parent, and includes suggestions based on the experiences of other parents of children with Ulcerative Colitis or Crohn’s Disease. It has been written mainly for parents of children under 16, but we hope it may also be of some interest to parents of older children.


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 so help 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.


Talking with Health Professionals

You may have found that you do not always have as long as you would like to talk to your GP or to the hospital specialists treating your child. To get the most out of the limited time you have during a consultation, it can be a good idea to:

• prepare by writing down any questions you have in advance, so you don’t forget them,
• take a friend or relative along with you for support and help with remembering the doctor’s answers to your questions,
• keep a list of your child’s medicines and a diary of your child’s symptoms and responses to treatment, so the facts are at your fingertips when you come to discuss them. If your child is a teenager, they can keep their own symptom diary. They may like to use one of the online diaries or mobile phone apps now coming onto the market.

It is worth trying to build up a good relationship with all the health professionals looking after your child, as you may well be seeing them regularly for some years. Your child will also need to develop their own relationships and knowledge about their IBD. Do not be afraid of asking questions when you need to know something, and encourage your child to ask their own questions too. Many hospitals have specialist IBD nurses attached to the gastroenterology team and these are often a great source of extra information, help and support.

If you have serious concerns about a diagnosis or treatment, you can ask your GP to refer you to another specialist. This takes time however, so it may be better to try and resolve the problem with your current IBD team first.


Where can I get information and support?

Although some parents do not want to be overloaded with infor

mation, others want to learn all they can about IBD and how it affects their child. Finding out as much as you can about IBD can help you build up confidence in yourself and your ability to respond to your child’s needs. It can also make you more confident about discussing treatment and other issues with the doctor, and answering the questions your child asks you.

Our website (www.crohnsandcolitis.org.uk) is one of the most comprehensive websites devoted to IBD and all of our publications can be read and downloaded directly from this site.

It may well take time for you to come to terms with the fact that your child has a lifelong condition, and that he or she may need to take daily medication for a long time or perhaps permanently. It is common to go through a period of ‘grieving’ as you get used to the idea.

“We found that if we talked in a knowledgeable way, it helped us build up a good relationship with l the health professionals we dealt with.”
(Mum of a 15 year old with Crohn’s Disease)

You may want to talk to other parents about how you feel. Our Parent to Parent service is a telephone helpline offered by volunteers all of whom have had a child with IBD. We also have a more general supportive listening service, Crohn’s and Colitis Support, which you may find helpful. This is also run by volunteers with personal experience of IBD. The Family Network is a special group within Crohn’s and Colitis UK that offers support to families with a child or young person with IBD. It arranges activities and events for both children, parents and siblings, and can be contacted through the Crohn’s and Colitis UK office and website. CICRA (0208 949 6209 www.cicra.org), the Crohn’s in Childhood Research Association, also offers help to the families of children with Crohn’s and UC.

“You blame yourself, what did you do that gave your child this problem? The answer is, nothing, but you feel guilty. As a parent you feel it’s your job to keep your child safe and well, and you can’t, because you have no control over the disease. Talk to people – you are not alone, never bottle it up.”

(Mum of an 11 yr old with UC)

How can I help my child cope?

Many parents have found that being well informed about IBD makes coping easier. Tell your child as much as you think they can understand about the condition, and try and answer any questions as honestly as possible. Some children may find some of their symptoms, such as blood in stools, rather frightening: try and reassure them as much as you can. Start showing your child simple ways to manage their condition, and as they get older, encourage them to take increasing responsibility for managing their own treatments and medication.

Your child, like you, will probably need time to get used to the idea that they have a long term illness. Some children seem to accept it well initially, but then, after a setback, start to feel depressed as they realise the condition is not going to go away. They may also, quite understandably, get upset about having to go through uncomfortable tests, take unpleasant tasting medicines or be seen with ‘embarrassing’ treatment aids such as a nasogastric tube. You can help by acknowledging their distress, while at the same time reminding and reassuring them that flare-ups are generally temporary, and that they should feel better after the treatment.

Children often feel less isolated if they can talk to other children in a similar situation, so it can be worth trying to make contact with other families with IBD. Crohn’s and Colitis UK has the Family Network, Local Groups across the UK, and a pen pal page for our members. You may also find your IBD team can put you in touch with other local families. We also have an online discussion forum for young people on our website.

If you think it would help your child, or you, to talk through any anxieties or concerns with someone who has experience of counselling people with ongoing illnesses, check and see whether your IBD team includes a counsellor or child psychotherapist. Your GP practice may also have a counsellor on the staff.

Try to focus on the positive: what your child can do rather than what he or she cannot do. If possible try not to restrict family life because of your child’s IBD, although you may find that if your child has a relapse, certain activities or outings have to be postponed until they feel better. Encourage your child to make the most of periods of good health, and not to use IBD as an excuse for not doing things.

Coming up in Part 3 - Tests and Treatments