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Understanding inflammatory bowel disease in children

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VOL: 103, ISSUE: 3, PAGE NO: 28

Jane Roberts, PGDip, BSc, RN, RSCN, is a paediatric gastroenterology nurse specialist at Central Manchester and Manchester Children's University Hospitals

Inflammatory bowel disease is the collective term used to describe Crohn's disease, ulcerative colitis and indeterm...

Inflammatory bowel disease is the collective term used to describe Crohn's disease, ulcerative colitis and indeterminate colitis. All of these conditions cause inflammation of the intestinal tract. They are chronic in nature and have periods of exacerbation and remission (Greveson, 2006; Pearson, 2004).

Crohn's disease can affect any area of the intestinal tract from the mouth to the anus, whereas ulcerative colitis and indeterminate colitis affect the large bowel or colon. There is no cure for IBD but symptoms can be controlled by treatment. Medium or long-term therapy may be required to promote and maintain remission of IBD.

Nutritional therapy

The treatment of choice for paediatric Crohn's disease is nutritional therapy (Escher et al, 2003; Pullen, 1999) in which all of the patient's requirements for energy, protein and other nutrients are met by a nutritionally complete liquid diet. This can be either polymeric (based on cow's milk protein) or elemental (based on amino acids) if there is a family history of cow's milk intolerance.

The child remains on the diet for at least six weeks, and up to eight weeks if there is significant weight loss prior to diagnosis. While on this therapy no other food is allowed. Information on daily requirements and expected outcomes is provided primarily by a dietitian, who will discuss a plan for food reintroduction with the family and provide follow-up to monitor symptoms.

Negotiating skills should be employed to encourage the patient to take therapy by mouth. If the patient finds the liquid feed unpalatable, a nasogastric (NG) tube can be used. The child and family must be taught how to manage the tube and how to follow the feeding regimen.

When an NG tube is required for school-age children, the nurse specialist should contact the local community nurse and/or school nurse to ensure the school and family have access to support. The nurse specialist should also liaise with the school's special educational needs coordinator to ensure that the therapy does not disrupt the child's education.

Drugs therapy in IBD


This non-steroidal, anti-inflammatory preparation can be given orally or topically per rectum. It is used in the medium term to induce remission of Crohn's disease, ulcerative colitis and indeterminate colitis, and can also be used in the long term to maintain remission.


These anti-inflammatory drugs are used when a child is unwell at diagnosis or during an exacerbation of IBD. The drugs can be given systemically (orally as prednisolone, or IV as methylprednisolone) or per rectum to treat a localised area in the lower colon.

Families need to be given information on the immediate and also the potential long-term adverse effects of corticosteroid use, such as long-term growth retardation and osteopenia. There is no national consensus on how to reduce the use of corticosteroids, so nurse specialists and consultants at Central Manchester and Manchester Children's University Hospitals (CMMC) have devised a dose-reducing regimen for families to follow at home when their children have been taking the drugs for longer than three weeks.

It is also important for the nurse specialist to assess the varicella (chickenpox) status of children taking corticosteroids, because of the drugs' effects on the immune system. This will ensure that a child without varicella immunity is given antibodies quickly if she or he comes into contact with chickenpox. The nurse specialist should ensure that a blood sample is taken and tested, explain to the family why a varicella titre is required and what to do if they suspect their child has been in contact with chickenpox.


This long-term immunosuppressant can be used as an initial treatment to reduce bowel inflammation or to help a steroid-dependent patient to reduce and stop steroids as it is not associated with the same long-term adverse effects. However, the nurse specialist must advise the family of the possible side-effects of azathioprine and how the child will be monitored.

The recommended monitoring regimen is weekly blood tests for eight weeks, and then at least three-monthly if results are stable. Assessing an initial blood sample for thiopurine methyltrans-ferase (TPMT) will predict the likelihood of neutropenia and liver dysfunction developing (Pearson, 2004).

The nurse specialist should contact the family when a blood sample is required. If any side-effects are apparent, such as a low white blood cell count or a low neutrophil count, then the consultant or registrar should be contacted and the treatment plan will need to be revised.

Revision of a treatment plan may involve reducing the azathioprine dosage and rechecking bloods until the results are within normal limits. Support for families during this time is important because they will be concerned about the side-effects and the implications of reducing the dosage. Prompt action will also be required if the child's condition deteriorates.


Infliximab is an immune modulator used to reduce inflammation in the intestine and treat fistulising Crohn's disease when a patient reacts or does not respond to other drug treatments. A chest X-ray and Mantoux test is required to exclude tuberculosis.

Education of the family

The National Service Framework for Children, Young People and Maternity Services (DH, 2004a) states that providing information to ensure that both patients and parents participate in provision and delivery of care is a marker of good practice.

Providing patients' families with information encourages them to become more involved in care decisions, and improves self-care and the ability to seek treatment when appropriate (DH, 2004a). Improving Chronic Disease Management (DH, 2004b), says that good management involves encouraging self-care and coordinating services to minimise hospital appointments and admissions.

Parents of children with long-term conditions have an overwhelming desire for information regarding their child's condition and treatment (Fisher, 2001). Information should be given on several occasions because it will not all be absorbed at once.

At CMMC an IBD helpline has been set up to help provide this information. It is staffed by the two nurse specialists from 7am to 11am Monday to Friday. An audit in 2005-2006 found that 98% of families reported that the helpline was useful. Reasons for using the helpline included:

- To report worsening or improvement of condition;

- To obtain treatment/medication advice;

- To arrange blood or other tests and obtain results;

- To obtain general IBD information;

- Outpatient enquiries;

- To obtain bone/joint information or liver information;

- To seek reassurance about treatments and behaviour;

- To seek advice about school issues, holidays, benefits and general support.

The helpline has reduced the number of IBD-related calls to secretaries. Greveson (2006) highlighted that nurses are able to assess the patient and make recommendations when they are taking such calls. This reduces the need for outpatient appointments.

Psychological support for the whole family

At CMMC parents who wanted information and support from other parents formed a network group. Family evaluation sheets have also highlighted the need for more family networking opportunities for children and young people as well as a young people's forum.

Referrals to CMMC child psychology or the child's local service can be made by any member of the gastroenterology team and there is a monthly meeting between nurses, doctors and child psychologists to discuss children who may need help. Families are also encouraged to contact their child's school in order to explore counselling and educational psychology services.

There is a close working relationship with the play specialist department, which provides support and desensitising programmes for children if they become upset during blood sampling, cannulation or visits to the operating theatre.


IBD in children impacts upon the whole family, so the family should be part of the care and therapy programme.

Good communication and education is highlighted as the key way to assist families to become the experts in care. This expertise helps the families develop the control that is essential to self-care (DH, 2004a; 2004b; 2005).

Learning objectives

- Detail how you would educate the child and family about IBD and engage them in its treatment

- Describe how you would implement and manage a programme of nutritional therapy

- Outline the available drug treatments, explain for which patients they would be appropriate, stating which markers would require monitoring and how frequently

- Detail additional services to involve if children have trouble adjusting to IBD and its treatmentGuided learning

- Outline your place of work and why you were interested in this article

- Detail the last time you encountered a patient with IBD

- Identify the information in the article that could have helped you in the care of that patient

- Explain how you intend to disseminate what you have learnt among your colleagues

This article has been double-blind peer-reviewed

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