Malnutrition is common in clients with ulcerative colitis. Malnutrition may be due to anorexia, malabsorption, fluid and electrolyte disturbance and side-effects from medications (Razack & Seinder, 2007). Subsequently, malnutrition leads to fatigue and an inability to carry out some activities of daily living. Katie often feels fatigued, and is concerned about studying for her university examinations while trying to work part-time as an Extended Care Assistant. While fatigue can interfere with Katie’s ability to work, altered mobility related to osteoporosis may also be of concern to her. Osteoporosis is due to the relationship between inflammatory responses and an increase in bone breakdown; the use of corticosteroids as a treatment option; and diminished vitamin D and calcium levels due to malabsorption (Razack & Seinder, 2007). Rest is of utmost importance to clients with ulcerative colitis, especially during exacerbations of the disease. Often clients are sleep deprived due to nocturnal diarrhoea and abdominal pain. Restricted activity and bed rest are to be encouraged (Bliss & Sawchuk, 2005) during symptomatic episodes.

BODY IMAGE

The stigma attached to bowel disease, as for any disease that is not visible, often means that the client may not discuss symptoms, fears and concerns (Johnson, 2007; Rogers-Clark et al, 2005). Katie is worried about developing symptoms, such as urgency to defecate every hour, during the university examination period. She has seen a student counsellor and has been granted special consideration that will enable her to sit the exams in an alternative venue; however, she is worried that her friends will want to know why. Katie’s greatest fear is that of faecal incontinence, as this would be humiliating and embarrassing for her. Katie’s fears are not uncommon for a person living with ulcerative colitis, and as a result of her fears, her body image may suffer. Not to mention that fatigue and anorexia can interfere with the ability to maintain employment and engage in social activities, and may affect the ability to form and maintain personal relationships (LeMone & Burke, 2008). This student is regularly reminded of how this chronic illness has shaped and changed her life, and may be grieving the loss of her former life, as she comes to terms with living with ulcerative colitis (Lubkin & Larsen, 2006; Rogers-Clark et al, 2005).

QUALITY OF LIFE

During an acute exacerbation of this chronic condition, clients may feel lethargic or dirty, and changes in their physical appearance, be it weight gain due to corticosteroid treatment or weight loss due to chronic diarrhoea and malnutrition, may affect their willingness to engage in social activities. Diarrhoea and the subsequent odour are often a concern. Deodorisers and wipes should be kept close by, to ensure that the dignity of the client is maintained. Another factor to consider is perianal skin care, because often this area becomes excoriated and uncomfortable due to frequent diarrhoea (Bliss & Sawchuk, 2005). While chronic diarrhoea, fatigue and malnutrition may have an impact on the day-to-day life of a client with ulcerative colitis, the thought of potential surgery to treat the disease can also be of concern. Surgery may be considered as an option for those clients who do not respond to other forms of treatment, as some clients with ulcerative colitis require a total colectomy with an ileal pouch–anal anastomosis (LeMone & Burke, 2008). Surgery does not come without client concerns and fears. It is therefore the nurse’s responsibility to ensure that the client and family members are supported through this period of change in their lives. Physical intimacy with family members may be affected, and the client may lose interest in enjoyable activities (Normile, 2004). To compound matters, clients with longstanding ulcerative colitis are at risk of developing colorectal cancer (LeMone & Burke, 2008), with some authors suggesting that one in six patients with ulcerative colitis die as a result of colorectal malignancy (Hurlestone & Brown, 2007). Statistics such as these may impact severely on the quality of life experienced by those clients diagnosed with ulcerative colitis.

INTERVENTIONS TO ATTAIN COMPLIANCE

A key component of the treatment regimen for ulcerative colitis is medication management, because medication therapy may induce remission (Normile, 2004) and reduce the incidence or relapse. It is therefore important for the nurse to provide the client and family members with information pertaining to the prescribed medication management regimen. Factors such as actions, route of administration, interactions and side-effects of the prescribed medicines should be discussed to promote client awareness of the rationale for each type of prescribed medicine. Because of the chronic nature of ulcerative colitis, many clients may turn to alternative treatment options and remedies to relieve their symptoms. While acupuncture, reflexology and aromatherapy are considered appropriate stress reduction techniques, some therapies may interact with prescribed medications, and therefore the client is instructed to discuss these therapies with their medical officer or nurse in the first instance (Bliss & Sawchuk, 2005).

A client’s nutritional status is often compromised very early in the disease process (Razack & Seinder, 2007) and therefore along with the medication regimen, nutritional support is of vital importance. There are two schools of thought pertaining to the relationship of food types that may cause an exacerbation of IBD, with some authors suggesting that particular foods may cause an exacerbation of IBD (LeMone & Burke, 2008), and others suggesting that there is no evidence to suggest that particular foods exacerbate the condition (Johnson, 2007). As a result diets are tailored to suit the needs of the individual.

Due to the prevalence of osteoporosis, vitamin and mineral depletion, dehydration and anaemia, a well-balanced diet is of utmost importance. Most authors suggest that an individualised diet including nutrient supplements during the symptomatic episode and after remission is valuable (Johnson, 2007; Rayhorn & Rayhorn, 2002). However, enteral or parenteral alternatives may be considered if nutritional deficiencies are severe.

FAMILY AND CARERS

As mentioned earlier, ulcerative colitis is often diagnosed during the most productive years of a client’s life. This therefore may have an impact on career choices, financial commitments and personal relationships. Families and caregivers may be anxious and apprehensive about what the future holds. Anxiety may not only relate to the diagnosis and symptom control, it may also be associated with issues such as loss of income and an increase in family expenditure due to the cost of medical appointments, hospitalisation and medications (Normile, 2004). It is therefore the nurse’s role to provide an environment where the client and caregiver can freely discuss concerns, worries and fears. Where possible, the nurse can then include other members of the multidisciplinary healthcare team to provide information and support.

EDUCATION FOR THE PERSON AND FAMILY

While medical treatment aims at controlling inflammation, education centres on client self-management, where the client ultimately becomes the expert in managing their condition with the assistance of support networks. As with any chronic disease, clients with ulcerative colitis must manage their treatment regimens as well as any symptoms which may arise. This requires focus and commitment, while they still try to maintain a ‘normal’ life (Rogers-Clark et al, 2005). The role of the nurse therefore is in facilitation, whereby through a process of negotiation and information sharing, treatment options and choices are discussed (Rogers-Clark et al, 2005).

Anticipatory guidance related to outcomes and disease process as well as disease trajectory and management may also be provided. However, it is important to discuss this information once the client has demonstrated a readiness to learn more (Lubkin & Larsen, 2006). Ongoing support and education pertaining to medication management, diet nutrition and lifestyle changes are the prime focus of the nurse. The role of the nurse specialist in the field of IBD is now recognised in many countries (Johnson, 2007), with nurses working alongside clients and their families to provide support, assistance and education (Edge, 2006). However, if access to a clinical nurse specialist is not available it is important for the client and their family to have regular contact with their family doctor, and visit a dietitian. The client and family may also choose to join a community support group related to IBD.

CROHN’S DISEASE

Crohn’s disease is a chronic inflammatory condition and is one of the most significant forms of inflammatory bowel disease in our society. The disease is non-specific to a single area of the gastrointestinal (GI) system, but is unlikely to affect upper GI systems of the mouth, oesophagus and stomach (Metcalf, 2002). The most common sites affected are the terminal ileum, jejunum and colon (Bliss & Sawchuk, 2005). A large proportion of cases involve the small intestine and therefore adequate nutritional status of patients can be significantly compromised (Ruthruff, 2007).

Crohn’s disease is most prevalent in adolescents and younger adults, with initial onset experienced in the 10–30-year age group. The insidious nature of Crohn’s disease means that it can have a serious impact on employment, relationships and social interactions (Normile, 2004).

In the earliest stages of the disease inflammation promotes lesion formation in the intestinal sub-mucosa, which over time trsverses the intestinal wall to eventually involve the mucosa and serosa (Huether, 2006). These lesion formations lead to thickening of the intestinal wall and on inspection can be likened to a cobblestone (Huether, 2006). This leads to intestinal wall lumen narrowing and associated stricture development. The affected areas are in many cases regional, as they may affect one particular area of the bowel, skip a section and then represent as another affected area. These discontinuous areas are classified as ‘skip lesion’ (Bliss & Sawchuk, 2005).

Client symptoms will vary due to the severity of inflammation and the area of bowel affected (Normile, 2004). Symptoms include increased frequency of bowel motions, abdominal pain, rectal bleeding (although rare), weight loss, reduced appetite and faecal incontinence (Huether, 2006; Younge & Norton, 2007). There is no known medical cure, and frequently the only available option is surgical intervention and subsequent stoma formation.

An added complication of Crohn’s disease is the unpredictability of periods of recurrence and remission. Malabsorption is the precursor to a major clinical sign of the disease and the most common, diarrhoea. Associated symptoms, including abdominal cramping, weight loss and rectal bleeding, due to the inflammatory process and mucosal breakdown, are also prevalent (Huether, 2006; Metcalf, 2002). These symptoms may vary, however, due to the location and extent of inflammation, with pain varying from intermittent to constant, and mild to severe (Bliss & Sawchuk, 2005; Normile, 2004).

Psychosocial concerns are often given a low priority by medical staff and other health professionals, but patients view these issues as some of the most important. Elements including sympathy, compassion and counselling, together with a genuine interest by care providers to assist and empathise, are highly regarded by patients (Younge & Norton, 2007).

Low self-esteem, altered perceptions of body image, isolation, loss of control and loss of energy are just some of the main concerns of individuals living with Crohn’s disease (Younge & Norton, 2007). Due to the early onset of Crohn’s disease, these concerns are justified, as social activities are severely affected when an attack occurs.

CASE STUDY 22.2

Max Phillips is a 63-year-old male. He is married to June who is supportive of his condition and enjoys excellent health. They have two adult daughters who reside in Victoria with their families.

Max was admitted to a surgical ward for an elective total colectomy and formation of an end ileostomy. He had undergone a colonoscopy six weeks earlier, which demonstrated active severe Crohn’s disease of the rectum, sigmoid and descending colon.

Max had been diagnosed with Crohn’s disease in 1982 after years of mild symptoms that were well controlled with conservative management of Mesalazine and steroids for acute attacks. Symptoms and acute attacks had increased over the previous two years, consisting of bloody diarrhoea up to 16 times a day, abdominal pain, vomiting and weight loss of 25 kg in that time, not settling with steroid therapy. He retired from Aurora Energy, where he was employed as a linesman, eighteen months ago due to ill-health.

Max’s other co-morbidities include an anterior acute myocardial infarction (AMI) in 2002 for which he underwent balloon angioplasty. He has a strong family history of cardiac disease, as his father died from an AMI at age 55, and his brother has coronary artery disease.

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