- What is inflammatory bowel disease (IBD)?
- Statistics on IBD
- Risk factors for IBD
- Progression of IBD
- Symptoms of IBD
- Clinical examination of IBD
- How is IBD diagnosed?
- Treatment of IBD
What is inflammatory bowel disease (IBD)?
- Ulcerative colitis: Characterised by inflammation confined to the mucous membranes of the colon (bowel) and rectum;
- Crohn’s disease: Characterised by inflammation of any of the gastrointestinal organs.
|For more information on ulcerative colitis, see Ulcerative Colitis.|
|For more information on Crohn’s disease, see Crohn’s Disease.|
These conditions occur because the immune system does not function properly. They are typically incurable and require lifelong treatment. Other conditions that fall under the banner of IBD but which do not involve immune system dysfunction include:
- IBD – type unclassified: This diagnosis is given to approximately 5% of individuals with IBD because their disease shows features of both ulcerative colitis and Crohn’s disease on investigation;
- Indeterminate colitis: A diagnosis given when the doctor has diagnosed colitis, but the type (ulcerative or infective) cannot be determined;
- Infectious IBD: Inflammation of the colon caused by infection;
- Ischaemic IBD: Inflammation of the colon caused by lack of blood flow (ischaemia);
- Radiation-induced IBD;
- Medication-induced IBD.
Statistics on IBD
IBD is a prevalent condition in Australia, affecting an estimated 61,000 individuals at any given time. IBD is more prevalent in Australia than epilepsy or road traffic accidents, and has a similar prevalence to type 1 diabetes and schizophrenia. In 2005, more than 1,600 new cases of IBD were diagnosed.
Symptoms of IBD
Quality of life (QoL)
IBD is a severely debilitating condition that has a significant impact on an individual’s daily wellbeing and functioning. Those with active disease (disease that causes symptoms) experience greater quality-of-life (QoL) impairment compared to those in remission (with asymptomatic disease), and QoL is further impaired by worsening symptoms. The disability and lost quality of life caused by IBD are comparable to the effects of a broken rib or sternum, mild arthritis, asthma or the amputation of an arm. IBD is associated with a greater burden of disability than type 1 diabetes and epilepsy. Its debilitating and life-shortening effects are also greater than those associated with chronic back pain, rheumatic heart disease and mental retardation.
In one European study, three quarters of respondents reported they were unable to engage in normal leisure activities as a result of their IBD symptoms. IBD produces symptoms that typically include pain, vomiting, diarrhoea, bleeding, fatigue, anal irritation and itchiness, flatulence and bloating. Many of these symptoms are considered ‘socially unacceptable’, and individuals with IBD may feel stigmatised as a result of their symptoms and subsequently experience low self-esteem.
Lost quality of life is costed using DALYs/QALYs (disability adjusted life years and quality adjusted life years, respectively). Using the DALYs model, the cost of IBD-associated reduced quality of life was estimated at $2.4 billion in Australia in 2005. However, evidence suggests that health practitioners rarely enquire about the impact of IBD symptoms on quality of life, indicating that QoL is rarely addressed in the management of IBD. In a European study, nearly half the respondents reported that their doctor did not discuss the impact of their disease on QoL.
- Loss of energy;
- Sleep difficulties, which typically worsen with increasing IBD symptoms;
- Loss of control;
- Issues associated with body image, including feeling dirty, which are exacerbated in patients who require an ostomy;
- Conflict related to work, education or family;
- Isolation and fear, including fear about the future and fear of being in public in case of a diarrhoea attack; and
- Lack of information about their condition.
Individuals with IBD are more likely to experience depression and appear to have higher rates of other mood disorders such as panic and anxiety. These disorders impair the individuals’ QoL and response to treatment. Individuals with IBD require emotional support from health professionals, family members and informal carers to help them cope with the impact of IBD. This may be particularly true for children and adolescents.
Children and adolescents
There are serious psychological effects associated with IBD in childhood, including depression, anxiety, social isolation and negative self-image. For children and adolescents with IBD, these conditions can affect the establishment of identity, social skills and cognitive abilities, which typically develop in in childhood and adolescence. Dietary restrictions may also impact on their quality of life, as can guilt related to being a burden because of their condition.
The symptoms of IBD, including altered appearance and faecal incontinence, can cause social embarrassment and withdrawal. Children with ulcerative colitis appear to be more affected by bowel symptoms, while for those with Crohn’s, systemic symptoms and appearance changes were the key areas of concern. There are also gender differences in the factors affecting psychological health, with boys being more concerned about short stature and reduced strength, and girls more concerned about weight gain.
Young IBD sufferers are often reluctant to discuss their symptoms and may deny that IBD interferes with their lives. Issues such as anger and frustration associated with their symptoms and treatment may only be drawn out after persistent questioning. Children may limit their activities to ensure they are close to a toilet at all times. However, frequent toilet trips may cause embarrassment and result in the child feeling stigmatised by peers. Growth failure, which causes the child to be smaller than usual for their age, and the side effects of medications used to treat IBD (e.g. facial swelling, acne) may cause embarrassment and stigmatisation. Children may also face discrimination from teachers who lack awareness of their condition. Adolescents with IBD may avoid sexual intimacy due to their symptoms, and experience greater difficulties in the transition to adult life.
Social support, particularly support provided by family, appears to help adolescents cope psychologically with their condition. In one study, a positive maternal relationship was associated with reduced rates of depression, functional disability and bowel movement, while family dysfunction was associated with increased pain and frequency of bowel movements.
Unsurprisingly, a child’s IBD severity is also associated with psychological distress in their parents. Parents of children with IBD should consider how their child’s condition is affecting them, and talk to their child’s doctor about steps that can be taken to reduce any negative QoL affects.
IBD onset usually occurs at 15–40 years of age, a time when individuals are economically and educationally productive. At this time of life, individuals often have significant educational and financial commitments and IBD can considerably impair a person’s ability to meet their life commitments in the short term. Interruptions to work and education can also have ongoing adverse impacts on their ability to participate in the workforce and on their earnings. In a European study, approximately two thirds of IBD patients reported that their symptoms adversely affected their ability to work. Amongst individuals with Crohn’s disease, in the year after diagnosis 25% require time off work due to symptoms of their disease, and 15% are unable to participate in the workforce 5–10 years after diagnosis because of Crohn’s disease.
There is a significant loss of productivity amongst individuals with IBD, which includes absenteeism due to illness and medical appointments, early retirement and reduced productivity throughout working life (e.g. a person may only be able to cope with part-time work). On average, individuals with IBD are absent from work 7.2 days each year as a result of IBD. While the majority of sick leave is paid by the employer, 22–29% of time off work is unpaid and results in lost wages for the individual with IBD. Carers of people with IBD may also need to take time off work to provide assistance.
As individuals with IBD need ready access to a toilet, they may be prevented from working in certain occupations, including outdoor work environments, jobs requiring lengthy travel and production lines. IBD patients may also face workplace discrimination which limits opportunities for career development.
In Australia, IBD-associated absenteeism is estimated to cost $52.3 million each year, the majority of which ($44.1 million) is borne by employers. In addition, an annual cost of $204.2 million is associated with lost earnings for early workplace separation and retirement.
The impact of IBD on educational attainment is particularly problematic when IBD begins in childhood. A Scottish study reported that 57% of children with IBD were absent from school for a period of ? 2 months at some point in their school life. This resulted in delays completing end of school exams for ~7% of children, and created a need for additional tuition or home schooling arrangements for some. A British study reported that 17% of children with IBD were unable to sit school exams as a result of their condition. Absenteeism from school may limit the child’s ability to complete schooling or affect their educational attainment if they do manage to graduate.
IBD creates significant direct healthcare costs, the majority of which are covered out-of-pocket. In addition to the financial impact of lost productivity and days off work, individuals with IBD typically need to directly pay for some of their medical expenses (e.g. outpatient care and medicines), as well as to pay for informal care (e.g. someone to accompany them to the clinic) and transport to services. An average person with IBD will spend almost $600 each year on out-of-pocket expenses associated with managing their condition.
The symptoms of IBD can have a significant impact on an individual’s overall health. In particular, gastrointestinal symptoms such as persistent vomiting and diarrhoea can adversely affect an individual’s nutritional status and affect nutrient absorption and appetite. Weight loss and anaemia may occur as a result. Both major types of IBD (Crohn’s disease and ulcerative colitis) are associated with extra-intestinal symptoms (symptoms affecting body systems other than the gastrointestinal system) including eye, joint and skin symptoms.
How is IBD diagnosed?
Differentiating between types of inflammatory bowel disease
The symptoms of various forms of IBD are often similar and may also mimic other non-inflammatory conditions (e.g. appendicitis, irritable bowel syndrome). However, some differences in the appearance of the disease can be used to differentiate the two major forms of IBD.
|Feature||Crohn’s disease||Ulcerative colitis|
|Site affected by inflammation|
|Pattern of disease|
|Granulomas (collections of inflamed cells), strictures (narrow areas of the bowel) and fistulae (abnormal connections between to body organs)|
Treatment of IBD
Smoking is a risk factor for Crohn’s disease and plays an important (but not well understood) role in the pathogenesis of IBD. Smokers are more likely to develop Crohn’s disease, and smokers with Crohn’s have a poorer prognosis compared to non-smokers, including a greater risk of surgery and recurrence. Smoking cessation reduces the risk of relapse by 65%. This is similar to the extent to which medicinal treatment of Crohn’s disease reduces the risk of symptoms. Quitting smoking plays an important role in the management of IBD (particularly Crohn’s disease). If you are trying to quit smoking, remember that nicotine is highly addictive and quitting without professional support is difficult. You may need support from your doctor or referral to services that can help you attempt to quit smoking.
Smoking appears to decrease the risk of developing ulcerative colitis, though the reasons for this are not well understood. However, due to the wide range of adverse health effects associated with smoking, individuals should not continue smoking to control ulcerative colitis.
|For more information on smoking cessation, see Strategies for Quitting Smoking.|
Social support helps people cope with IBD, possibly by reducing social isolation and unfounded fears, and increasing feelings of control. Individuals value open communication about their disease and support from family members and, for adolescents, support from their peers. Programs aimed at increasing social support have had a positive effect on quality of life for individuals with IBD. There also appears to be an important role for programs that increase open communication about IBD and its symptoms. If you have difficulty communicating with others about IBD, talk to a health professional for advice. Your doctor may be able to facilitate a discussion about IBD, for example with other members of you family.
Developing relationships with other children who have IBD can be beneficial for children. One study examined quality of life in children with IBD before and after attending an IBD summer camp. Overall, the children’s quality of life improved with camp attendance. Specifically, they reported improved social functioning, bowel symptoms and reduced treatment-related stress, which was thought to occur due to their illness being ‘normalised’ through the camp experience. Another program, in which adolescent girls with IBD and their mothers attended monthly support groups discussing issues such as transition to college, intimacy and dating, reported improved emotional and social functioning in the girls, as well as improved quality of life.
If you have difficulty coping with IBD, ask your doctor to refer you to a support group.There are also a range of web-based resources for children and adolescents with IBD, through which they can interact with other IBD sufferers and access information about their condition, although it is unknown whether children who access web-based resources experience quality of life improvements.
Coping strategies are cognitive and behavioural changes that help an individual to manage their disease, symptoms and treatment. There is conflicting evidence regarding the impact of various coping strategies on quality of life for individuals with IBD. Some studies in adults and adolescents have found that negative coping strategies (e.g. self-pitying, social withdrawal and resignation) are associated with reduced quality of life. Reduced problem-solving and reduced positive reappraisal of their condition were also associated with reduced quality of life. Conversely, a positive outlook for the future amongst adolescents was associated with improved quality of life.
Interventions that aim to develop coping skills and strategies appear to have an important role in improving quality of life for people with IBD. A lifestyle program involving stress management, education and self-care was associated with improved quality of life and reduced anxiety in adults. A range of other lifestyle programs may be used in the management of IBD, including:
- Exercise, which may help reduce stress and symptoms associated with IBD, and also plays an important role in avoiding complications (e.g. reduced bone mineral density, reduced immune response and psychological ill health);
- Sleep hygiene, with the aim of overcoming the sleeping difficulties that commonly arise in patients with IBD and impair their psychological wellbeing.
Interventions to address nutritional deficiencies
Nutritional deficiencies are common in individuals with IBD. The doctor is likely to conduct a full nutritional assessment so that they can identify and correct any nutritional deficiencies. This is an important component of IBD management. A dietitian is commonly part of the multi-disciplinary IBD management team. You may be asked to complete a questionnaire to help the doctor or dietitian assess nutritional status. The doctor may also wish to conduct tests to determine whether or not you have micronutrient deficiencies, including:
- Vitamin D and other vitamins;
- Vitamin B12: This deficiency is particularly common in individuals with Crohn’s disease.
Nutritional support to correct deficiencies is an important component of IBD treatment. This may involve taking supplements or modifying your diet. Folate supplementation may also be used. Individuals with IBD who take folate supplements appear to have a lower risk of colorectal cancer.
Macronutrient support (i.e. support to increase calorie intake) is necessary for individuals with IBD who:
- Have lost ? 15% of their BMI or body weight;
- Have reduced absorption in the gut (e.g. in short bowel syndrome, when parts of the intestine have been removed);
- Are children experiencing growth failure or delayed growth, which may be treated with macronutrient support.
In these cases, total parenteral nutrition (feeding via an intravenous drip) may be necessary. High energy or protein supplements may also be used to prevent macronutrient loss.
Nutritional interventions are not effective for inducing remission (controlling the symptoms) of acute ulcerative colitis. However, exclusive enteral feeding (feeding via a tube into the gut) is a commonly used and effective method of inducing remission of active Crohn’s disease. The strongest evidence for exclusive enteral nutrition is in the treatment of childhood Crohn’s, which achieves remission in 60–80% of children. In children, tube feeding is more effective than corticosteroid medications for induction of remission. It is also effective in adults, though current evidence suggests corticosteroids are more effective for adults.
Some individuals with colitis develop lactose intolerance as a result of their condition. This contributes to symptoms such as flatulence and bloating. A lactose-free diet may provide symptom relief for individuals with lactose intolerance. Avoiding dairy foods is not associated with any benefits in lactose-tolerant individuals.
A range of other nutritional interventions are used in the management of IBD. These include:
- Oral probiotics (tablets containing beneficial bacteria): There is limited evidence that probiotics are effective in the treatment and maintenance of ulcerative colitis, and there is no evidence supporting their use in the management of Crohn’s disease. However, they may have a role to play in preventing a less common form of IBD;
- Fish oil and other foods rich in omega 3 fatty acids are associated with reduced mucosal inflammation in individuals with IBD, but there is not yet enough evidence to support the routine use of fish oil supplementation.
Education and access to health services
Being educated and informed about IBD can help affected individuals and their families to cope with the condition. Being able to access health services in times of need is also an important component of coping. For example, an individual with IBD may require urgent access to their doctor in the event of a flare-up to avoid going to the emergency department. However, obtaining an urgent appointment can sometimes be difficult. Talk to your doctor about IBD and material you can read to get more information about the condition, as well as how to best arrange an urgent appointment in the event of a flare-up.
The vast majority of individuals with IBD believe that adequate information about their condition is important, but only about half the people with IBD get as much information as they feel they need. Read any material available at the clinic (e.g. posters, leaflets) and ask your doctor for written material or websites you can read at home. This may include information about IBD, how the condition is treated, and steps you can take to manage your condition. If you are thinking about using surgery to treat IBD, make sure you get written information about the procedure from your doctor. Your doctor may be able to organise for you to talk to someone else who has had the same type of surgery so you can hear about their experience with the operation.
IBD can be severely debilitating and often has a psychological impact; however, there is conflicting evidence regarding the effectiveness of psychotherapy at improving symptoms or quality of life for individuals with IBD. Current evidence suggests that psychotherapy has a role in improving quality of life and psychological health, but does not impact on symptoms. For example, interventions such as cognitive behavioural therapy, relaxation and stress management have been associated with favourable effects on psychological disorders (depression, anxiety), coping and psychosocial functioning, but have rarely been associated with improvements in gastrointestinal symptoms. Psychotherapy interventions appear to have greater effectiveness in adolescents than in adults.
Many people with IBD experience negative psychological effects and it is quite normal to be referred to psychological support services. Do not be alarmed if your doctor refers you to a psychotherapist or other specialist, or offers psychological support. The doctor may also suggest that your family should access psychological support services.
The limited evidence available for hypnotherapy is promising. In one small study, adults who underwent hypnotherapy experienced improved quality of life and reduced inflammation of the gastrointestinal system in IBD. Hypnotherapy also holds promise for younger patients who tend to respond favourably to this treatment compared to adults; however, no studies have been done of hypnotherapy to improve IBD in children or adolescents.
A range of medicines are used in the treatment of IBD, and many of the same medicines are used to treat ulcerative colitis and Crohn’s disease. Medication adherence is vital for effective management of IBD; you must take your medicines at the correct times every day in order to treat your condition effectively. Medication non-adherence (not taking the medicines correctly) has been shown to worsen the symptoms of IBD, which in turn affects quality of life.
Aminosalicylates are medicines that act on the mucous membranes of the gastrointestinal system to moderate their inflammatory response. They are available in a range of topical (creams and gels applied to the site of inflammation) and oral (tablets which are swallowed) formulations.
Medications are used to induce remission (relieve symptoms of active disease) and for maintenance therapy (maintaining symptom-free periods of disease) in mild to moderate cases of ulcerative colitis. For these individuals, maintenance therapy with aminosalicylates may considerably reduce the risk of colorectal cancer (by up to 75%).
While aminosalicylates are used in the treatment of Crohn’s disease, they are more effective in relieving ulcerative colitis.
Corticosteroid medications inhibit the processes that cause inflammation and play an important role in inducing remission of moderate to severe, active IBD (including both Crohn’s and ulcerative colitis). Oral and topical preparations are available, and a combination of the two preparations has been found to be more effective than either used alone. Topical steroids may also be used in combination with oral aminosalicylates. The dose of corticosteroids need to be reduced gradually when it is time to stop taking the medicine (e.g. because your symptoms have been relieved). Abruptly ceasing to take the medication increases the risk of your symptoms returning.
Corticosteroids are not effective agents for maintenance therapy as they cause significantly more side effects than aminosalicylates. There is also an increased risk of infection while taking steroids, as these medications suppress the immune system. Disturbed mood and sleep, cosmetic changes such as swelling and acne, and long-term effects on bone and eye health may also occur if you take corticosteroids for a long period of time. If you receive corticosteroid therapy for more than 3 months, the doctor will probably need to monitor the health of your bones, eyes and your body as a whole.
Other medicines have been demonstrated to be effective in the treatment of Crohn’s disease when others fail or are not tolerated, including:
- Infliximab: A new medicine belonging to a group of medicines known as an anti-TNF-alpha inhibitors;
- Methotrexate: A folic acid antagonist sometimes used to treat cancer;
- Immunosuppressants: Medicines that suppress the immune system;
- Antibiotics: Although their use is limited to cases associated with infection.
Surgery is usually reserved for individuals who fail to respond to other treatments. Up to 50% of people with IBD require surgery at some stage. Indications for surgery include:
- Growth retardation in children;
- Disease that does not improve with other treatment;
- Severe colitis;
- Bowel obstruction;
- Stricturing disease (causing narrowing of the bowel);
- Suspected or diagnosed cancer.
A range of surgical techniques can be employed depending on which sections of the gastrointestinal tract are affected and extent of disease. In ulcerative colitis, a surgical procedure called colectomy (removal of the colon) may cure the condition. Surgery does not cure Crohn’s disease, but may improve the symptoms.
Tips for coping with IBD
IBD is typically incurable and the disease can significantly disrupt an individual’s life. If you have IBD and are having difficulty coping with the symptoms, the following tips may be useful:
- Prepare outings in advance to alleviate any fears you may have. This may include:
- Identifying where the toilets are in shopping centres and restaurants when or before you arrive;
- Being aware if the toilet needs to be opened with a key, as this may require more time;
- Carrying toilet paper with you;
- Carrying spare underwear with you;
- Create awareness among your friends and family, as there is a general lack of awareness of IBD in the community and this can contribute to inadvertent discrimination and stigmatisation. This may include:
- Discussing a child’s condition with their teacher to make them more aware of the reasons the child needs to make frequent toilet trips;
- Asking the doctor or another health professional to facilitate a discussion with family members;
- Attending a support group with a member of your family;
- Find activities that you can participate in despite the limitations IBD places on you. For example, if you are unable to participate in sports, you may find handicrafts or other activities are possible;
- Think positively about the future and recognise the opportunities as well as the limitations that may present themselves. Cognitive behavioural therapy may help you to develop positive behaviours and thought patterns if you have trouble being positive in the face of IBD;
- Exercise regularly, as this can help reduce stress and may also reduce future complications which can arise because of IBD;
- Take your medications as prescribed by the doctor, as good medication adherence reduces the severity of symptoms and the likelihood that you will experience an acute flare-up. This is likely to have a positive psychological effect;
- Practise relaxation techniques;
- Practise good sleep hygiene;
- Join a support group where you can interact with other people affected by IBD;
- Educate yourself about your condition and the various options for treatment. This may reduce feelings such as loss of control. Your doctor can provide you with information or refer you to other sources, such as internet-based information.
For more information on inflammatory bowel disease, including how the digestive system works, types of IBD and useful videos, see Inflammatory Bowel Disease (IBD).
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