Crohn’s Disease: Presentation to Management
Interview with Theresa Lowry Lehnen (GPN, RNP, PhD) – Clinical Nurse Specialist and Associate Lecturer Institute of Technology Carlow
Inflammatory Bowel Disease (IBD) describes a group of conditions in which the intestines become inflamed. The two most common inflammatory bowel diseases are Crohn’s disease and ulcerative colitis. Another form of IBD is microscopic colitis.
There is no official database which gives accurate figures, but it is thought that at least 40,000 people are living with IBD in Ireland. There were 5.9 new cases of Crohn’s disease in Ireland per 100,000 population in 2011 and 14.9 new cases of ulcerative colitis. The incidence of Crohn’s disease is higher than ulcerative colitis in children. Males and females are affected equally and patients can be diagnosed at any age, including babies and children. The peak age of incidence is between the ages of 15 and 35, with a second (smaller) peak from the 50s to 70s. IBD diagnosed in children can behave differently and can be treated differently to that diagnosed in adults.
Crohn’s Disease Latest Research
Efforts are underway to better understand if commonly used medications for Crohn’s and Colitis alter the risk of complications of COVID-19. Irish investigators from St. Vincent’s University Hospital are working as part of a global research study called SECURE-IBD (https:// covidibd.org/) to understand how the disease impacts Crohn’s and Colitis patients. Information on over 1,000 patients with Crohn’s and Colitis who have been diagnosed with COVID-19 has already been analysed and the results to date provide some initial reassurance – with little evidence to show that patients with IBD are at greater risk of contracting COVID-19.
Professor Glen Doherty, Consultant Gastroenterologist at St. Vincent’s University Hospital said: “The initial results of this study are really promising as they show that people living with Crohn’s and Colitis are mostly not at greater risk of complications of COVID-19 and may not be as vulnerable a group as we initially feared.
“Crohn’s and Colitis are becoming much more common in our population. The number of new cases diagnosed each year has tripled in the last 10 years. It is estimated that currently 0.5% of the population suffer with Ulcerative Colitis (UC) and 0.3% of people with Crohn’s. This translates to 40,000 patients in Ireland living with these diseases but most don’t like to talk about it because of the embarrassing nature of the symptoms.” Doherty said “Continued research and ongoing clinical trials are essential so we can find new treatments for the increasing number of people living with this disease.”
Crohn’s Disease Development
According to Theresa Lowry Lehnen, Clinical Nurse Specialist and Associate Lecturer Institute of Technology Carlow, Crohn’s disease (CD) is a chronic idiopathic inflammatory bowel disease characterized by transmural inflammation and lesions that can affect the entire gastrointestinal tract, but most commonly occurs at the terminal ileum and colon. The prevalence of CD has an incidence of 3 to 20 cases per 100,000. The exact pathogenesis of CD is unknown, although a number of genetic, immune system and environmental factors have been shown to increase the risk of the illness and lead to the aberrant gut immune response characteristic of the disease.
There is both direct and indirect evidence to suggest that genetics plays a role in the development of Crohn’s disease.
Theresa told Hospital Professional News, “Direct evidence is provided as 32 different specific genetic alterations have been identified which are more common in people with Crohn’s disease than in the population at large, and indirect evidence seen because Crohn’s disease appears to run in families. The immune system also becomes disrupted in Crohn’s disease and sends tumour necrosis factor (TNF) antibodies to kill all bacteria, regardless of whether they are friendly or not. TNF antibodies cause most of the inflammation associated with Crohn’s disease.”
One of the most notable risk factors for developing Crohn’s disease is smoking, aside from family history and ethnic background.
Theresa explains why saying, “Smokers are twice as likely to develop Crohn’s compared with non-smokers and those who smoke usually experience more severe symptoms compared with those with the condition who do not smoke. While there is no evidence that diet causes, or plays a role in Crohn’s disease, certain types of food and drink have been associated with worsening symptoms including milk, dairy products, alcohol, spicy, fatty and high-fibre foods. There is no single diet or eating plan that will work for everyone with Crohn’s disease and dietary recommendations must be tailored individually. Although flares are sometimes associated with stressful events, there is no evidence to prove that stress causes or contributes to Crohn’s disease.”
There are 3 main phenotypes of CD: inflammatory, stricturing, and penetrating. Presenting symptoms are variable and some patients may have symptoms for years before the diagnosis of Crohn’s disease is made. Patients with inflammatory disease often present with abdominal pain and diarrhoea, and may develop more systemic symptoms including weight loss, low-grade fevers, and fatigue. Patients with stricturing disease may develop bowel obstructions while those with penetrating CD can develop fistula or abscesses. When an abscess is present, in addition to abdominal pain, patients can have systemic symptoms such as fever and chills and may also present with signs of acute peritonitis.
Diagnosis of Crohn’s Disease
Theresa notes that the diagnosis of Crohn’s disease can be quite difficult given that presenting symptoms can be insidious and nonspecific.
“Symptoms that require further investigation include weight loss, bloody diarrhoea, iron deficiency, and night-time awakenings,” she says. “Similarly, significant family history of IBD, unexplained elevations in the C – reactive protein level, sedimentation rates, or other acute phase reactants such as ferritin and platelets, or low B12 should prompt further investigation.
“There is no single test that can be used to confirm or disprove a diagnosis of Crohn’s disease. The diagnosis of CD is made on the basis of symptoms, endoscopic and radiologic findings. (Colonoscopy, Biopsy, SBE, CT, MRI, Wireless Capsule Endoscopy) Pathology can also be confirmatory.
“Other conditions can mimic symptoms of CD so it is important to rule out infection and other causes even when patients with known CD are having flare-ups. Patients with diarrhoea should be assessed for infection, IBD, and in certain cases coeliac disease. Other conditions that may present similar to CD include appendicitis, Behcet disease, and Ulcerative Colitis.”
Both Crohn’s Disease and Ulcerative Colitis (UC) are inflammatory bowel diseases (IBDs), but there are some key differences.
It is important not to confuse inflammatory bowel disease (IBD) like Crohn’s disease or ulcerative colitis with irritable bowel syndrome (IBS). IBS is a disorder that affects the muscle contractions of the bowel and is not characterized by intestinal inflammation, nor is it a chronic disease, she adds.
Treatments
While there are several medications available to treat Crohn’s disease, there is no cure. Here Theresa gives an overview of some of the more common treatments.
Steroids
Steroids are used to induce remission but are not an effective maintenance agent. Steroids are usually only used to treat the active disease because their long-term use is associated with a range of adverse side effects. Budesonide and prednisolone are two steroids that are often used to treat Crohn’s disease.
Budesonide is usually the first choice of steroid prescribed to help control the symptoms of Crohn’s disease. Taken on a short-term basis of less than 12 weeks budesonide may cause acne, oedema of the face, hands, arms, feet and legs, mood changes, insomnia and indigestion. If taken for more than 12 weeks, budesonide may cause osteoporosis, increased vulnerability to infection, cataracts, muscle cramps and stiffness, and vitamin D and calcium supplements will be required to help protect against the effects of osteoporosis. Due to increased vulnerability to infections, close contact with people who are known to have infections, particularly those with chickenpox, measles and shingles should be avoided.
Prednisolone is used in cases where budesonide proves ineffective. It has the same type of short and long-term side effects as budesonide, and has also been known to cause mental health problems in an estimated 5% of people.
Aminosalicylates
Sulfasalazine belongs to a group of medicines called aminosalicylates, known to reduce inflammation inside the colon. Sulfasalazine can be used as an alternative to steroids to treat mild cases of Crohn’s disease. Common side effects include headache, nausea, abdominal pain and diarrhoea.
Immunosuppressants
Immunosuppressants are used in maintenance therapy and in combination with steroids when a person has a relapse of symptoms. Two immunosuppressants widely used for treating Crohn’s disease are azathioprine and mercaptopurine.
Common side effects of azathioprine include increased vulnerability to infection, bleeding and bruising. Less common side effects include headaches, shortness of breath, dizziness, nausea and vomiting.
Mercaptopurine originally developed to treat leukaemia has since proved effective in the treatment of Crohn’s disease. Given in tablet form, its side effects are not as severe as those associated with other forms of chemotherapy treatment. Common side effects include nausea and vomiting while less common side effects include loss of appetite, fatigue, and breathlessness and weakness caused by anaemia. Effective contraception if sexually active is important while taking mercaptopurine, as it temporarily affects both ova and sperm and can increase the risk of birth defects.
Biological Therapies
Biological therapies are a new type of medication created using naturally occurring biological substances, such as antibodies and enzymes. Two main biological therapies are infliximab and adalimumab. Infliximab is usually only recommended in severe cases of Crohn’s disease that have not responded to steroid and immunosuppressant treatments, and where the person is unsuitable for surgery.
The goal of medication management is to control the inflammation and induce a clinical remission with pharmacological therapy, however, most patients will eventually require surgery. Unfortunately surgery is not curative and patients still require ongoing therapy even after surgery for disease recurrence.
Surgery
Surgery is required when the symptoms of Crohn’s disease cannot be controlled using medication alone. During surgery, the inflamed section of the digestive system is removed and the remaining part is reattached. An estimated 80% of people with Crohn’s disease require surgery at some point in their life. Surgery does not cure Crohn’s disease, but it can provide long periods of remission, often lasting several years. A stoma may be required if the disease or inflammation is so severe that an immediate anastomosis is not safe. In some in¬stances, the stoma may be temporary and can be closed once the severe inflammation and infection is controlled. A colostomy is also required if the rectum is removed.
Over 40,000 people in Ireland are living with inflammatory bowel disease (IBD), most of whom are diagnosed between the ages of 15 and 30. Of these approximately 20,000 people suffer from colitis and Crohn’s Disease.
Theresa notes that most Irish patients are hospitalised within two years of diagnosis and more than half will eventually need surgery. “A report by the Irish Society for Colitis and Crohn’s Disease in 2015, showed that 49% of sufferers lost or had to leave a job because of their condition. The report also showed that Crohn’s alone cost the health service ¤185 million a year and that paediatric cases of IBD have increased three-fold in Ireland since 2003,” she says.
“A survey of service providers treating patients with IBD, conducted by the Irish Society of Gastroenterology (ISG), found that the lack of dedicated specialist nurses in Ireland was the greatest barrier to delivering patient care. The Irish Society for Colitis and Crohn’s Disease campaign for the 2018 World IBD Day (#DoubleUp) proved very successful. The campaign called for the number of specialist Inflammatory Bowel Disease (IBD) nurses to be increased from 14 to at least 28, to bring Ireland in line with international best practice. As of May 2019 the number of specialist nurses in Ireland has increased to 26.
“A holistic person-centred approach is required in the management of patients with Crohn’s Disease, who face a lifelong condition that can be emotionally and physically debilitating. The role of the clinician is to provide ongoing assessment, management, support and education. Key roles are to establish a therapeutic relationship with the patient, assess their understanding of the condition, establish goals and expectations for successful management of their condition and evaluate their physical, emotional, and psychological well-being.
“Common concerns for patients are adherence to their therapeutic regimen, pain and discomfort. Many patients experience anxiety, anger, frustration, stress and depression. Assessment, monitoring, audit and evaluation for disease activity, progression, and effects of the therapeutic regime on a patient with Crohn’s disease is a continuous process. By implementing person-centred care, monitoring and evaluating symptoms, outcomes and responses to therapy, clinicians play a pivotal role in managing the illness and improving the patient’s quality of life.”
References available on request
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