Caring for adolescents with Crohn's disease

Authors

Mick Cullen, Paediatric gastroenterology nurse specialist, Southampton Children’s Hospital, Southampton, England.

Claire Barnes, Paediatric gastroenterology nurse specialist, Southampton Children’s Hospital, Southampton, England.

Short description

Learn how Crohn's disease presents among adolescents and how to manage the condition effectively in young people going through puberty.

Detailed description

Crohn's disease is a chronic inflammatory bowel condition that affects more than 115,000 people in the UK. This learning module focuses on Crohn's disease in adolescents. Management of the condition in this group should address adolescent-specific characteristics and treatment goals. Key elements include optimising growth, pubertal development and social functioning, including education. The condition can affect an individual's mental and emotional wellbeing significantly, as well as their physical health. As adolescence is a time of great change, the additional burden of a chronic illness can prove difficult to manage. The authors provide information on the presentation of Crohn's disease in adolescence and insights into the particular issues encountered by this group.

Module overview

Crohn's disease is a chronic inflammatory bowel condition that affects more than 115,000 people in the UK. This module focuses on Crohn's disease in adolescents. Management of the condition in this group should address adolescent-specific characteristics and treatment goals. Key elements include optimising growth, pubertal development and social functioning, including education. The condition can affect an individual's mental and emotional wellbeing significantly, as well as their physical health. As adolescence is a time of great change, the additional burden of a chronic illness can prove difficult to manage. The authors provide information on the presentation of Crohn's disease in adolescence and insights into the particular issues encountered by this group.

Keywords

adolescents, child development, child health, Crohn's disease, gastrintestinal disorders, gastroenterology

Aims

This module aims to provide an overview of Crohn's disease in adolescence and offer insights into the condition, the effects it has on those diagnosed, and the issues that nurses and other clinicians should address in managing adolescents with the condition. The time out activities are intended to supplement the module and further readers' understanding of the condition and problems and issues specific to adolescents with Crohn's disease.

Intended learning outcomes

After reading this module and completing the time out activities you should be able to:

• Describe the signs and symptoms of Crohn's disease.
• Outline the steps involved in diagnosing the condition in adolescents.
• Explain how adolescents with the condition may be supported to improve their emotional wellbeing.
• Describe the pharmacological treatments available for Crohn's disease and the order in which these treatments should be introduced.

Introduction

Crohn's disease is an inflammatory bowel condition that can significantly affect an individual's physical and mental wellbeing and impair daily functioning. Crohn's disease is named after Burrill Crohn, an American gastroenterologist who, with others, reported a number of cases of the condition in the early 1930s (Crohn et al 1932). It is classified as an inflammatory bowel disease (IBD). Adolescents with Crohn's disease face particular challenges and require special consideration to meet their needs because they can potentially have a more aggressive form of the condition (Van Limbergen et al 2008) and because adolescence is a pivotal point in their growth, development and educational progress.

Characteristics of Crohn's disease

• In Crohn's disease, the immune system is triggered to cause inflammation anywhere along the gastrointestinal tract.
• The disease is characterised by healthy segments of bowel interspersed with patches of disease – ‘skip lesions'.
• Inflammation extends through all layers of the bowel wall and may involve lymph nodes and supporting membranes. Crohn's disease most commonly affects the small and large bowel.
• It is a long-term condition characterised by unpredictable periods of remission and relapse. All age groups can be affected, but there is a peak in onset in the adolescent years (Johnston and Logan 2008).

Symptoms

Symptomatic features include:

• Abdominal pain.
• Diarrhoea.
• Rectal bleeding.
• Weight loss.
• Poor growth.
• Delayed puberty.

Manifestations

• As the entire gastrointestinal tract can be affected, mouth ulcers, anal tags, fissures and fistulas are features of the condition.
• There can also be manifestations of the condition outside the gastrointestinal tract. Inflammation of the tract's accessory organs, for example the liver and pancreas, can occur.
• Skin lesions and inflammation of the joints and parts of the eye have also been reported.
• The effect of the condition on the individual's mental wellbeing can be significant.
• There may also be associated chronic fatigue, which is often underappreciated.

Learning Points

1. Crohn's disease is an inflammatory bowel condition that can significantly affect an individual's physical and mental wellbeing and impair daily functioning.
2. In Crohn's disease, the immune system is triggered to cause inflammation anywhere along the gastrointestinal tract and affecting the small and large intestine.
3. Symptomatic features include: abdominal pain, diarrhoea, rectal bleeding, weight loss, poor growth and delayed puberty.

Epidemiology

Crohn's disease affects people worldwide but is more prevalent in northern Europe and the Western world. This implies there are environmental influences on the condition, which may include socioeconomic factors and/or internal gut flora differences (Rampton and Shanahan 2006). The number of children diagnosed with Crohn's disease is increasing worldwide, with a range of 2.5 to 11.4 per 100,000 of population reported in various studies (Benchimol et al 2011). In the UK, it is estimated that the condition affects one in every 650 people (Crohn's and Colitis UK 2013a), with up to 25% of diagnoses taking place in adolescence (Crohn's and Colitis 2013b). Crohn's disease is slightly more common in women but in paediatrics there is a slight male dominance (Sawczenko et al 2001).

Causes of Crohn's disease

• People with a family history of IBD also have an increased likelihood of developing the condition (Peeters et al 1996).
• Crohn's disease is more likely to occur in people who smoke, and smokers are more likely to experience more clinical relapses (Thomas et al 2000).
• It is not yet known why someone develops Crohn's disease, but it is generally accepted that there is a genetic component and an environmental component, as well as individual gut bacteria and immune system components.
• Research continues to investigate the cause of Crohn's disease and the role of each of these components.

Learning Points 

1. The number of children diagnosed with Crohn's disease is increasing worldwide, with a range of 2.5 to 11.4 per 100,000 of population as reported in various studies.
2. Causes of Crohn's disease are: family history of IBD, smoking, socioeconomic factors, genetic components, individual gut bacteria and immune system components.

Diagnosis

Diagnosis can take a long time. Symptoms may be tolerated by the adolescent for months before disclosure to parents, and parents may wait to see if symptoms improve while questioning their child's recent diet or activity before seeking advice from a GP. The GP may prescribe a course of antibiotics and also follow a wait-and-see approach before referring the adolescent to a gastroenterology centre.

Investigations

• A detailed history of symptoms, family history of bowel conditions, clinical examination and a combination of other investigations are required to establish a diagnosis.
• There is no specific blood test for Crohn's disease, but blood tests can assist in efforts to achieve a diagnosis and give an indication of how the body is affected by the condition.
• Stool cultures are important to rule out infective causes of symptoms.
• A full blood count, together with raised C-reactive protein and erythrocyte sedimentation rate (which are markers of inflammation), will give an indication of the extent of blood loss and determine whether the body is working hard to repair itself (Beattie et al1995).
• Nutritional markers, for example low albumin, may indicate a poor dietary intake from feeling ill or an inability to process food and nutrients because of inflammation.
• Radiological procedures, such as abdominal X-ray, contrast studies, ultrasound, computed tomography (CT) or magnetic resonance imaging (MRI), provide information on the shape and flow through the small and large bowel. In addition, they can provide an indication of the extent of bowel wall thickening and sites of disease.
• A screening test for the presence of faecal calprotectin may be useful in helping differentiate between irritable bowel syndrome and IBD (National Institute for Health and Care Excellence (NICE) 2013). However, it is not a standalone diagnostic tool and has its limitations.
• A variety of testing kits are available, with varying reference ranges; there can be overlap between positive and negative ranges, but it is generally accepted that a highly positive test can indicate IBD and disease severity in the absence of infective cultures. This can help expedite referral of the patient from primary care to a gastroenterology centre.
• Histological confirmation of Crohn's disease is advised for all paediatric or adolescent patients and is achieved with gastroscopy and colonoscopy.
• Visualisation of the terminal ileum and colonic mapping biopsies are advised, as well as biopsies from the upper gastrointestinal tract – oesophagus, stomach and duodenum (Sandhu et al 2008).
• In paediatric centres, endoscopies are mostly conducted under general anaesthetic. However, adolescents going through the transition process, where paediatric management overlaps with adult care, may undergo endoscopy under light sedation in some centres. The nurse has a role in preparing adolescents for these diagnostic tests.

Learning Points 

1. A detailed history of symptoms, family history of bowel conditions, clinical examination and a combination of other investigations are required to establish a diagnosis.
2. Radiological procedures, such as abdominal X-ray, contrast studies, ultrasound, computed tomography (CT) or magnetic resonance imaging (MRI), provide information on the shape and flow through the small and large bowel.
3. Histological confirmation of Crohn's disease, which is advised for all paediatric or adolescent patients, is achieved with gastroscopy and colonoscopy.

Presentation

Adolescence is a time of rapid growth and physiological changes, coupled with a move towards individualism and enhanced socialisation. Developing a chronic condition at the same time can pose challenges to the individual, the family and the healthcare professionals involved in diagnosing and treating him or her (Michaud et al 2007). The additional burden of a chronic condition while maturing into an adult can prove demanding (Suris et al 2004).

Presentation of Crohn's disease in adolescents depends on the site, severity and chronicity of symptoms. The onset can be florid with active disease, or a creeping, insidious presentation. While clinicians accept that paediatric and adult disease have similar presentations of both gastrointestinal and non-gastrointestinal symptoms, it is acknowledged that presentation is more severe in children and adolescents. There is a greater progression to surgery and the psychosocial effect of the disease is more evident in adolescents than in adults (Van Limbergen et al 2008). Poor growth, delayed puberty and nutritional impairment are common features.

Abdominal pain is the most common presentation (Sawczenko and Sandhu 2003). The classic triad of symptoms experienced by adults with Crohn's disease at presentation are abdominal pain, diarrhoea and weight loss (Mowat et al 2011). In the paediatric population, these features accounted for 25% of those diagnosed (Beattie et al 2006). Box 1 lists the presenting features.

Box 1. Signs and symptoms of Crohn's disease that may be seen at presentation in paediatric patients

Signs:

• Anal fistula.
• Growth failure and/or delayed puberty.
• Anal abscess or ulcer.
• Erythema nodosum and/or rash.
• Liver disease.
• Appendectomy.

Common symptoms:

• Abdominal pain.
• Diarrhoea.
• Bleeding.
• Weight loss.
• Lethargy.
• Anorexia.

Other symptoms:

• Arthropathy.
• Nausea and/or vomiting.
• Constipation and/or soiling.
• Symptoms of poor mental health.
• Secondary amenorrhoea.

(Adapted from Sawczenko and Sandhu 2003)

Many adolescents with Crohn's disease present with vague complaints such as tiredness, weight loss over a long period of time and abdominal discomfort, or with isolated growth failure. The variety of symptoms associated with Crohn's disease can lead to delay in diagnosis. Disease in the perianal area may occur in the form of abscesses, fissures and fistulas. These manifestations can cause pain and embarrassment and may prove difficult to manage. Areas outside the gastrointestinal tract (extra-intestinal) can also be affected by Crohn's disease (Box 2).

Box 2. Non-gastrointestinal tract manifestations of Crohn's disease

Joints Arthritis can occur, leading to painful swollen knee, hip or ankle joints. The joints and ligaments in the spine can also be affected, leading to sacroiliitis or ankylosing spondylitis.

Skin erythema nodosum – red painful lumps (nodules) on the lower legs, shins and occasionally the arms – can occur. Pyoderma gangrenosum is a rare chronic skin ulceration occurring on the extremities.

Eyes individuals can experience iritis (inflammation of the iris causing pain), photophobia, contraction of the pupil and discoloration of the iris, or episcleritis (inflammation of the eyeball).

Liver inflammation and scarring of the liver and bile ducts (primary sclerosing cholangitis) may occur.

Effects on mental wellbeing

Crohn's disease can also affect adolescents' mental wellbeing. It can have an influence on how individuals think and go about their daily functioning.

• Missing school because of illness, treatment and outpatient appointments can cause adolescents to fall behind in their studies, affecting their confidence.
• It may lead to embarrassment, social isolation and low mood. The condition can make toileting noisy, painful and unpredictable at times. Sometimes the nature of the treatment may induce further stressors.
• Compliance with medications is difficult at any age, but particularly so in adolescence.
• Physical side effects of medication such as corticosteroids, different administration routes including rectal therapies, and toxicity of treatments, for example infliximab, can have a detrimental effect on mood and self-esteem.
• Low mood and low self-esteem are often exacerbated if the condition proves unresponsive to medical therapies and the possibility of surgery is raised. For such adolescents, it is important to have access to an IBD nurse specialist at the local hospital to discuss concerns and offer support.

Some teams in regional centres have the support of mental health professionals and psychologists. A mental health liaison nurse working closely with the multidisciplinary team can offer patients support, advice and help with coping mechanisms to address the complex array of mental health issues that arise from living with Crohn's disease.

Visit the websites for the Crohn’s in Childhood Research Association (CICRA) (www.cicra.org) and Crohn’s and Colitis UK (www.crohnsandcolitis.org.uk) to become familiar with the information and support group details provided for adolescents with Crohn’s disease and their families.

Learning Points

1. The classic triad of symptoms experienced by adults with Crohn's disease at presentation are abdominal pain, diarrhoea and weight loss.
2. Common symptoms of Crohn's disease include diarrhoea, abdominal pain, bleeding and vomiting. Signs include anal fistula, anal abscess, liver disease and appendectomy. Non-gastrointestinal symptoms include arthritis, erythema nodosum, iritis, inflammation and scarring of the liver and bile ducts.
3. Mental wellbeing is affected and patients with Crohn’s disease may experience embarrassment, lack of confidence and social isolation.

Support

A chronic illness is difficult to come to terms with and manage at any age, but particularly during adolescence. The effects of Crohn's disease on the physical, mental and emotional wellbeing of adolescents with the condition are integral to the treatment, management and support offered. Adolescents represent a separate patient group from children and adults, who are managed in general paediatrics and adult medicine respectively, and so demand separate consideration and approaches (Payne et al 2005). Those caring for this group of patients require a good understanding of adolescent biopsychosocial needs (Department of Health 2004).

Non-judgemental communication approach

A non-judgemental communication approach that respects the young person's individuality and dignity is essential for understanding what Crohn's disease means to him or her and how it affects his or her life. Issues important to the adolescent are central to developing the management plan towards wellbeing.

Healthcare professionals and the family

As well as the severity of disease and level of treatment required, healthcare professionals should consider how the patient will function within the confines of self, peers, family and school. At a time when a young person is moving towards independence, receiving a diagnosis of Crohn's disease can inhibit this process. Concerned parents tend to step in and assert control over the treatment regimen and management. Families can fluctuate between overprotecting the adolescent and fostering independence, adding to frustrations if adherence is poor or treatment is failing.

Schooling

Schooling is an important concern, and adolescents with chronic conditions are more likely than their peers to miss school (Westbom 1992) and therefore risk isolation from their peers. While school and friends can be sources of support for adolescents with Crohn's disease, patients may be afraid to disclose their condition and worry about being embarrassed or singled out.

The IBD nurse specialist, with the consent of the adolescent and his or her parents, can be instrumental in encouraging disclosure and fostering a supportive environment (Andrews 1991). Visiting the school to inform teachers about the effects of the condition on adolescents may help the school to develop strategies for maximising school attendance and educational potential. These strategies may include, for example, allowing access to toilets within lesson times, reduced timetables during periods of illness and catch-up opportunities when symptoms are under control.

Charitable organisations

Charitable organisations such as CICRA (www.cicra.org) and Crohn's and Colitis UK (www.crohnsandcolitis.org.uk) offer support and advice for adolescents with Crohn's disease. Information leaflets, family days, helplines and other resources are available to help lessen the burden of the illness. The IBD nurse specialist is often involved in initiatives run by these organisations and should alert families to them.

Learning Points

1. Support can be provided by a non-judgemental communication approach, healthcare professionals and family, IBD nurse specialist and charitable organisations.
2. A non-judgemental communication approach that respects the young person's individuality and dignity is essential for understanding what Crohn's disease means to him or her and how it affects his or her life.
3. Families can fluctuate between overprotecting the adolescent and fostering independence, adding to frustrations if adherence is poor or treatment is failing.
4. The IBD nurse specialist, with the consent of the adolescent and his or her parents, can be instrumental in encouraging disclosure of the condition to his or her school and fostering a supportive environment.

Transition

A careful, considered and co-ordinated transition programme is vital in making a smooth transfer from paediatric to adult services. Transition is a process that guides the adolescent towards self-care, self-advocacy, assertiveness and self-determination. Usually co-ordinated by a dedicated IBD nurse specialist, the graduated transition plan should encourage an open, interactive relationship with the adolescent appropriate to their age and disease state.

The 'Ready Steady Go' transition programme (Southampton Children's Hospital, University Hospital Southampton NHS Foundation Trust 2014) has been adopted by the paediatric and adult gastroenterology teams in the local setting and is being used successfully.

Treatment

Adolescents with Crohn's disease often have a more complicated disease course than adults with the condition. They are dealing with the symptoms of the disease and also its effects on growth and puberty. Treatment options include exclusive elemental nutrition, aminosalicylates, corticosteroids, immunosuppressants, biologics and surgery. (Figure 2). Consensus guidelines have been produced on the medical management of paediatric Crohn’s disease (Ruemmele et al 2014).

Figure 2. Treatment pyramid for patients with Crohn's disease

The nurse's role

• Nurses have an important role in ensuring adolescents understand their treatments, assisting them to achieve concordance with their medications and promoting their integration with peers and engagement with usual activities.
• Taking regular medication can be a constant reminder for adolescents of their chronic condition, emphasising this difference from their friends. This can be particularly difficult because adolescents are already experiencing many changes and striving to assimilate with their peers.
• Nurses are in an ideal position to work alongside adolescents, providing them with written and verbal information about treatments, and empowering them and their families to make informed decisions about their condition and medication. The Royal College of Nursing (2007) provides further detail on role descriptors, including generic and specialist skills for IBD nurse specialists.

Crohn's disease is a chronic condition that can affect adolescents in different ways depending on which part of the gut is diseased. There are several types of medication available, which can be used individually or in combination.

Induction therapy: at diagnosis, the aim of treatment is to reduce inflammation in the gut and to induce remission – this is referred to as induction therapy.

Maintenance therapy: once the initial symptoms have been treated and controlled, doctors often prescribe medicines to keep adolescents well – this is called maintenance therapy.

It can be difficult for adolescents to understand why they have to continue taking medication when their symptoms have resolved. Nurses should explain that the medication is required to prevent relapse and ensure patients remain well.

Exclusive elemental nutrition

Exclusive elemental nutrition is sometimes used to treat adolescents with Crohn's disease. Elemental feeds are taken about six times a day instead of food for six to eight weeks (Nutricia 2012). These drinks provide adolescents with all the nutrients they need, have anti-inflammatory properties, are easily absorbed by the body and allow the gut to rest and recover. Adolescents often report feeling better within a few days of commencing exclusive elemental nutrition. Following this treatment, food is gradually reintroduced. Exclusive elemental nutrition is particularly beneficial for adolescents who have experienced weight loss, delayed puberty and growth failure as a result of malnutrition and persistent inflammation (Spray and Sandhu 2005). In addition, this nutritional treatment avoids the side effects associated with other treatments. However, it can be challenging for adolescents to remain off food for such a long period. Nurses and dietitians have an important role in supporting and encouraging adolescents with this treatment. The drinks can be flavoured, making them more palatable, with a taste similar to milkshakes. For school or college, the drinks can be stored in sports bottles, which allow for more discreet use.

Aminosalicylates

Aminosalicylates (5-aminosalicyclic acid, 5-ASA) are a derivative of aspirin and help to reduce inflammation in the bowel. Examples include mesalazine and sulfasalazine (Crohn's and Colitis UK 2014). These drugs deliver the 5-ASA directly to the bowel mucosa. They are taken every day to maintain remission. However, the role of 5-ASAs in Crohn's disease is controversial (Ruemmele et al 2014).

Corticosteroids

• Corticosteroids such as prednisolone or hydrocortisone can be used to treat acute flare-ups of Crohn's disease in adolescents (British National Formulary (BNF) 2014).
• Steroids can be administered orally, intravenously or topically to reduce inflammation. They are not used for maintenance treatment because of the associated side effects.
• Individuals must be weaned off the treatment dose slowly because the adrenal glands reduce or stop cortisol production during steroid treatment (Crohn's and Colitis UK 2014).
• The family should receive a steroid alert card and information sheet with the dosing schedule. The steroid alert card is a general safety alert, recommended by the BNF, that all those taking prolonged steroids should carry to notify medical staff. This can prevent steroid treatments being withdrawn suddenly and, if the person is unconscious, alerts medical staff to drug interactions and possible side effects of steroid therapy. Nurses should be aware of the potential side effects associated with steroid treatment so that they can inform families and ensure they know who to contact in case of concern.
Some of the more common side effects of steroids include increased appetite, increased blood pressure, immunosuppression, acne and glycosuria (BNF 2014).
• For adolescents who are going through a period of rapid growth, calcium and vitamin D supplements are often prescribed alongside steroids (Samson et al 2012).
• A proton pump inhibitor such as lansoprazole may be required, especially for those adolescents who already have gastritis (NHS Choices 2015).
• Taking steroids in the morning with or after food should help to avoid gastric irritation.

Nurses should ensure soluble prednisolone tablets are prescribed, since they are absorbed more effectively than enteric-coated tablets.

Immunosuppressants

Immunosuppressant drugs such as azathioprine and methotrexate work by suppressing the immune system. In Crohn's disease there is overactivity of the normal immune system, resulting in inflammation in the gut. Therefore, suppressing the immune system helps to reduce the amount of inflammation in the gut. Nurses should inform adolescents with Crohn's disease who are taking immunosuppressants about alerting the medical team if they have contact with anyone with an infectious illness, as they may need treatment. It is not safe to administer live immunisations when an adolescent is taking immunosuppressants. Attenuated vaccines may be given, although the individual may have reduced uptake because the immune system is suppressed. (although the affect on the individual may be reduced because the immune system is suppressed.)

Thiopurines: these are immunosuppressants used to maintain remission, and their use may often avoid the need for steroid treatment. Azathioprine and mercaptopurine can take up to three months to begin working. Adolescents should have weekly blood tests for the first month or after a dose change and at three-month intervals thereafter (Ruemmele et al 2014). This is because these medicines can suppress bone marrow function and occasionally cause problems with the liver or pancreas (Crohn's and Colitis UK 2014). Sometimes adolescents experience nausea or influenza-like symptoms when they first start taking this medication. Families should be reassured that this usually subsides, but they should contact the medical team if symptoms persist. There is a slightly increased risk of developing lymphoma while on this treatment, but research has shown that the benefits of treatment outweigh the risks (Crohn's and Colitis UK 2014).

Methotrexate: an immunosuppressant used to treat adolescents for whom thiopurines have failed or who are steroid dependent. It is administered either as a subcutaneous injection or orally on a weekly basis (Crohn's and Colitis UK 2014). As with thiopurines, it may take three months to take effect. Blood monitoring is required to examine the blood count and liver and kidney function, both before and during treatment. A supplement of folic acid is given because methotrexate has a folate-antagonist action (Hall 2007); taking this supplement weekly, in between doses of methotrexate, helps to reduce the side effects of nausea and vomiting (Crohn's and Colitis 2012).

Adolescents who are sexually active should ensure that both they and their partners use contraception. This is because methotrexate can cause birth defects and miscarriage (BNF 2014). Methotrexate can remain in the body for some time after administration, therefore couples are advised to avoid pregnancy for at least three to six months after treatment ends (National Association for Colitis and Crohn's Disease 2012).

Biologics

Biologics such as infliximab and adalimumab are sometimes called anti-tumour necrosis factor (anti-TNF) drugs because they work by binding to TNF alpha. TNF alpha is a cytokine produced by the immune system. Overproduction of this cytokine is thought to be partly responsible for the ongoing chronic inflammation in adolescents with IBD. Inhibiting the action of TNF alpha can help reduce inflammation, with consequent reduction of symptoms. Before starting these treatments, adolescents are screened for tuberculosis, which may include a QuantiFERON test and chest X-ray (Merck Sharp and Dohme 2014).

Infliximab: given at weeks zero, two and six, and then every eight weeks at 5mg/kg (Ruemmele et al 2014). It is an intravenous infusion and adolescents may be premedicated with intravenous chlorpheniramine and hydrocortisone to minimise the risk of side effects.

Adalimumab: a subcutaneous injection. Unlike infliximab, it is synthetic. It was the first human monoclonal antibody licensed for Crohn's disease in the UK (Kemp and Campbell 2009/2010). It tends to have fewer side effects than infliximab. Adalimumab is given every two weeks. Once established on treatment, adolescents or their parents can be taught how to administer it at home. This has obvious benefits in terms of avoiding time off school or college. Adalimumab comes in a pre-filled syringe or pen device, simplifying administration.

Activity

To gain insight into how concordance with the medication regimen may become problematic, reflect on the amount of medication required. For example, try placing one small sweet in a container for each type of medication a newly diagnosed patient with Crohn's disease may be prescribed each day.

The following is typical:

• Corticosteroid: eight tablets.
• 5-ASA: two tablets, three times daily.
• Immunosuppressant: one or two tablets.
• Multivitamin: one tablet.
• Anti-reflux: one tablet.

Box 3. Case study of an adolescent newly diagnosed with Crohn's disease

Tom, aged 16, is a keen footballer who is doing well at school. After four months of increased lethargy, abdominal pain and weight loss, he seeks medical help and is diagnosed with Crohn's disease. His school attendance suffers during this period, and he is forced to drop some GCSE subjects and stops playing football.

After an initial colonoscopy, he is started on a liquid-only diet. He begins to feel better and his energy levels increase within one week. The plan is to maintain this diet for eight weeks, then reintroduce food gradually. Tom becomes bothered by the taste of the elemental feed and a nasogastric tube is inserted to help him tolerate it better. After two weeks at home, he has not returned to school because he is worried what people might say about the nasogastric tube. The school sends a letter enquiring about his absence.

Tom has not ventured out much but has kept in contact with friends via social media. His birthday is coming up and he wants to go out with his friends for a pizza party. He wants the nasogastric tube to be removed and refuses to continue on the liquid diet. He wants medication instead. His mother is keen for him to stay on the diet because she feels it is helping. They argue and Tom retreats to his room in anger. His mother telephones the nurse to seek advice.

Surgery

Unlike ulcerative colitis, Crohn's disease cannot be cured with surgery. Crohn's disease can occur anywhere in the gut, including in previously healthy sections. There is always the chance that the disease will return close to the operation site or to another part of the gut. This may be treated with medication or sometimes requires further surgery. Blackburn et al (2013) indicate that surgery for paediatric Crohn's disease was associated with a 22% early complication rate and a 15% risk of relapse, based on ten years of data at a regional paediatric gastroenterology centre.

Surgery tends to be reserved for adolescents with acute and chronic complications of Crohn's disease that are resistant to medication or nutritional therapy (Spray and Sandhu 2005). Other indications for surgery include strictures in the intestine, abscesses or fistulas, intestinal obstruction, perforation or haemorrhage. Maintenance treatment is recommended following surgery-induced remission (Ruemmele et al 2014).

A local retrospective review of the time lapse between diagnosis of IBD in children at a tertiary gastroenterology centre to first bowel resection, found that most children who require surgery for Crohn's disease have an operation within three years of diagnosis, with the highest number of surgeries occurring in the first year of diagnosis (Barnes et al 2011). On average, 17% of children with Crohn's disease required bowel resection (Barnes et al 2011). However, data are limited since some of these children will have their first operation in adult services.

Surgery that involves stoma formation can be particularly challenging for adolescents. The stoma may be temporary, to rest the inflamed section of bowel, or permanent if bowel is surgically removed. Nurses can help prepare adolescents by involving the stoma nurse preoperatively and arranging contact with another adolescent who has had similar surgery, if time allows.

Advances in treatment

There is ongoing research into new types of treatment for Crohn's disease, such as different biologic therapies. In addition, there have been advances in genetic mapping for Crohn's disease and research in this field is developing rapidly. It is to be hoped that these are more options for surgical treatment and techniques are improving. It is to be hoped that these advances will lead to better outcomes for adolescents with Crohn’s disease.

Learning Points 

1. A careful, considered and co-ordinated transition programme is vital in making a smooth transfer from paediatric to adult services.
2. Exclusive elemental nutrition is sometimes used to treat adolescents with Crohn's disease. These drinks provide adolescents with all the nutrients they need, have anti-inflammatory properties, are easily absorbed by the body and allow the gut to rest and recover.
3. Corticosteroids such as prednisolone or hydrocortisone can be used to treat acute flare-ups of Crohn's disease in adolescents.
4. Overproduction of TNF alpha, a cytokine produced by the immune system, is thought to be partly responsible for the ongoing chronic inflammation in adolescents with IBD. Anti-tumour necrosis factor (anti-TNF) drugs such as infliximab and adalimumab are used.
5. Before starting infliximab and adalimumab treatments, adolescents are screened for tuberculosis, which may include a QuantiFERON test and chest X-ray.
6. Nurses are responsible for ensuring adolescents understand their treatments, assisting them to achieve concordance with their medications and promoting their integration with peers and engagement with usual activities.
7. Crohn's disease cannot be cured with surgery. Indications for surgery include adolescents with acute and chronic complications of Crohn’s disease who are resistant to medication or nutritional therapy.
8. Surgery to create a stoma may be temporary, to rest the inflamed section of bowel, or permanent if the bowel is surgically removed
9. There have been advances in genetic mapping for Crohn’s disease and research in this field is developing rapidly.

Conclusions

• Crohn's disease is a chronic condition that affects adolescents' physical, mental and emotional wellbeing. It can take a long time to reach diagnosis.
• Treatment options available include exclusive elemental nutrition, medication and surgery. Medications may be used individually or in combination
• The treatment option chosen depends on a variety of factors, including the location and severity of the disease, response to previous treatment and effects of the disease on growth and nutrition
• It is imperative that nurses have an understanding of the condition and the available treatments so that they are in a position to offer adolescents support and empower them to be involved in treatment decisions and management of their disease.
• The IBD nurse specialist is ideally placed to offer support, help reintegration at school and notify adolescents and their families of other support services.
• As adolescents are already experiencing many changes, support should be tailored appropriately and measures put in place to address transition to adult services.

Acronyms

BNF: British National Formulary

CT: computed tomography

IBD: inflammatory bowel disease

MRI: magnetic resonance imaging

NICE: National Institute for Health and Care Excellence

TNF: tumour necrosis factor

Glossary

Anal abscess: an infection at one of the anal sinuses that leads to inflammation and the formation of an abscess.

Ankylosing spondylitis: a long-term type of arthritis. It most commonly affects the bones and joints at the base of the spine where they connect with the pelvis.

Arthropathy: a collective term for any disease of the joints.

Crohn's disease: a chronic inflammatory bowel disease (IBD), most commonly occurring in the ileum or the colon. It is characterised by healthy segments of the bowel interspersed with areas of disease known as 'skip lesions'. Symptoms include abdominal pain, diarrhoea and rectal bleeding.

Episcleritis: a benign, self-limiting inflammatory disease affecting part of the eye called the episclera.

Erythema nodosum: an inflammatory condition of the skin, resulting in tender red lumps (nodules), usually on the shins.

Exclusive elemental nutrition: a liquid-only diet. Elemental feeds are high in nutritional value, easily absorbed and contain anti-inflammatory properties.

Faecal calprotectin: a substance that is released into the intestines when inflammation is present. A screening test for its presence can be used to help differentiate between irritable bowel syndrome and inflammatory bowel disease (IBD).

Proton pump inhibitor: drugs that reduce the amount of acid made by glands in the lining of the stomach.

Pyoderma gangrenosum: a condition that causes tissue to become necrotic, causing deep ulcers usually on the legs.

Sacroiliitis: an inflammation of one or both of sacroiliac joints, where lower spine and pelvis connect.

Secondary amenorrhoea: cessation of menstruation for six months or longer, during a previously established menstrual cycle.

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