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Spelling Out IBD

Spelling Out IBD
Photo: Spelling Out IBD
Inflammatory Bowel Disease, or ‘IBD’, refers to a group of autoimmune inflammatory conditions affecting the gastrointestinal system, particularly the colon and small intestine. The primary IBD conditions are Crohn’s Disease and Ulcerative Colitis (UC) and these are by far the most common. Worldwide, around five million people live with Crohn’s Disease and Ulcerative Colitis.

A widespread misconception is that ‘IBD’ refers to ‘irritable’ bowel conditions (typically IBS). This misconception is prevalent not only in the general community but also amongst medical, nursing and allied health professionals. Alison Battisti, CNS for IBD at St George Hospital in Sydney, reports that some general practitioners continue to refer patients with IBS to the specialty IBD clinic at St George. Though a few symptoms of IBS and IBD may be similar (such as diarrhoea and bloating), the conditions are quite different, with IBD having potentially devastating and life-limiting outcomes for patients.

IBD disorders are complex in presentation, progress, management and treatment. Their causes are not fully understood, but are believed to be a combination of factors including an autoimmune reaction to certain bacteria in the gut, changes in the gut bacteria themselves, genetics and environmental or physical ‘triggers’ that could include bacterial or viral illnesses, diet, stress, smoking or other unknown environmental factors. Despite much research and some major advances, no definitive causes have yet been identified. Professor Michael Grimm, Clinical Associate Dean at UNSW School of Medicine, Gastroenterologist and Head of St George & Sutherland Clinical School, notes that current research is focusing on how enteral bacteria change, and that advances in microbiology offer valuable new tools for profiling bacteria.

IBD occurs when the body's immune cells attack the intestinal lining, causing inflammation and ulcerations, which in turn can lead to various complications. It is characterised by periods of remission and acute flare-ups. Some people may remain in remission for lengthy periods, sometimes years, while others experience frequent flare-ups. IBD usually appears for the first time between the ages of 15 and 25, though it can start at any age, with cases as young as 2 years old being reported. It affects men and women equally. Previously thought to be a disease of developed countries, Professor Grimm notes its incidence is rising rapidly in India and China.

For most patients with IBD, their lives are ruled by their symptoms. Faecal frequency and urgency are common, and sufferers must know the location of toilets in any situation. This can be very limiting, and patients avoid unknown environments, decline social opportunities and refuse to travel for fear of losing control of their bowels. Flare-ups, hospitalisations and treatment regimes require time out from school, university or work, which can be poorly understood and misinterpreted as ‘unreliability’. Further, their productivity may be affected by fatigue from anaemia, pain and/or treatments. As IBD typically presents in teenage years or early adulthood when friendships and relationships are being formed, IBD sufferers may feel embarrassed, misunderstood and isolated. The physical, social, employment and educational challenges that must be faced by people with IBD are complex and profound.

Let’s briefly review the distinguishing features of Crohn’s Disease and UC.

Crohn's Disease can affect any part of the gut from the mouth to the anus, impacting absorption, digestion and elimination. Areas of inflammation are often patchy and may range in size from small lesions to extensive segments of disease. While Crohn’s is most likely to develop in the ileum (49%), it may occur in the small bowel, colon, oesophagus, stomach, duodenum, the perianal area or the mouth, or a combination of these. Symptoms will vary according to the extent and severity of the inflammation, but a crucial feature of Crohn’s is that it causes full thickness inflammation (compared with UC, which is limited to the first two mucosal layers).

Crohn’s is a chronic condition that is not curable, even with surgery. Treatment options are outlined below, but when surgery is used to remove diseased portions of the bowel, Crohn’s usually flares again at the site of the anastomosis or stoma and/or in other parts of the digestive system.

Depending on the location/s and severity of the disease, Crohn’s may cause various complications, including fissures, strictures, haemorrhoids, abscesses, fistulas, obstructions, perforations and rupture of the bowel.

Ulcerative Colitis causes inflammation and ulceration of the inner lining of the rectum and colon. These ulcers can bleed and/or produce pus and cause a range of complications as listed below. Ulcerative Colitis is generally categorised according to how much of the colon is affected, with three main types described: proctitis, left-sided or distal colitis, and extensive or total colitis.

Surgery can essentially cure ulcerative colitis if the large intestine and rectum are removed, though the resulting ileostomy or J-Pouch are not without their own challenges.

Symptoms

Symptoms for both Crohn’s and UC are grouped here together, but will vary according to the type, location, extent and severity of the disease. They include:
  • Feeling generally unwell, with or without fever
  • Abdominal pain and cramping
  • Diarrhoea (sometimes mixed with blood, mucous and pus)
  • Faecal urgency and frequency
  • Loss of appetite
  • Weight loss
  • Mouth ulcers
  • Fatigue (from the illness itself, anaemia and/or lack of sleep caused by pain or diarrhoea)
  • Iron deficiency anaemia and/or vitamin deficiency anaemias (from malabsorption or surgery)
  • Abscesses and fistulas (in Crohn's)

Crohn’s Disease and UC can also cause problems outside of the gastrointestinal system. These often occur during active disease, but may develop before any signs of bowel disease or during times of remission, and include:
  • Arthritis of the large joints and hands; ankylosing spondylitis
  • Skin conditions and inflammatory eye conditions
  • Bone thinning (from inflammatory processes, medications and poor absorption of calcium)
  • Liver disorders including Primary Sclerosing Cholangitis (PSC), which causes inflammation of the bile ducts and liver damage. PSC affects up to one in 13 people with UC and one in 25 people with Crohn’s
  • Blood circulation problems including predisposition to DVT.

Treatment

The aim of treatment in IBD is to achieve remission, prevent relapse and minimise the frequency and progression of flare-ups. Treatment may be medical, surgical or a combination of both.

Medical therapy remains the principal treatment for IBD. It may involve dietary adjustments and medication regimes comprising anti-inflammatory agents, antibiotics, aminosalicylates, and corticosteroids, immuno-suppressants, biological or ‘anti-TNF’ drugs such as Infliximab (Remicade) and Adalimumab (Humira), as well as symptomatic treatments for pain, diarrhoea, constipation and anaemia. Each of these agents carries risks and side effects that may also need to be managed.

At a September 2014 GENCA (Gastroenterological Nurses College of Australia) Conference at Liverpool Hospital, Dr. Scott MacKenzie discussed the role of surgery in IBD. Dr. MacKenzie is a Colorectal Surgeon and Senior Lecturer in Surgery at Liverpool Hospital. He stated, “Surgery can come at the end of a long and arduous struggle with IBD or in the fulminant first presentation it may be part of the very first encounter with the disease. IBD can require that patients undergo complex surgical procedures with far reaching physical and psychological effects often while still very young.”

Current Trends

Over recent years, specialist centres and clinics for IBD management have been emerging. These centres comprise multidisciplinary teams that may include gastroenterologists, specialist IBD nurses, surgeons, dieticians, social workers, paediatricians or other relevant clinicians. This ‘holistic approach’ to the management of patients with IBD has resulted in planned management and improved outcomes and, according to Prof Grimm, is the “key” to effective management.

Prof Michael Grimm strongly supports the emerging role of IBD nurses. Their contribution, he observes, involves overseeing of integrated care, monitoring treatments, acting as a reference point, advisor and advocate for patients, improving education for patients and families, and collecting data. These activities result in earlier intervention, reduction in hospital admissions and potentially halt the progression of flare-ups.

CNS Alison Battisti comments that patients often feel more comfortable discussing their symptoms and problems of daily living with their IBD nurse. Alison says, “Patients are more likely to pick up the phone to talk with their nurse about evolving symptoms, medications or other anxieties. The IBD nurse can then advise and make discretionary referrals if necessary.”

Professor Grimm, CNS Battisti and Dr. Scott MacKenzie agree that surgeons have an important role in the IBD team. Dr. MacKenzie states, “Surgical intervention is best provided when it forms part of a multi-disciplinary patient centred approach with the aim of providing individualised solutions.”

Future Directions

Education plays a crucial role not only for patients, but also for the general community to understand and support the needs of those living with IBD. Teachers, employers, friends, colleagues, family, and partners - indeed anyone who interacts with IBD sufferers - can positively or negatively influence their quality of life. Alison Battisti reports that the most frequent complaint from her IBD patients is the lack of awareness of those around them.

To learn more about IBD, many resources are available online from various health and dedicated IBD websites, with downloadable information brochures. It is particularly important for health care workers to be well informed about IBD as we are the people that patients look to for advice, understanding, empathy and advocacy.

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Mary Hickson

Mary Hickson is the Educator for NSW Health's Clinical Information Access Portal (CIAP). With a diverse range of experience as an educator, manager and clinician across metropolitan, regional and rural settings in NSW and Queensland, Mary has specialised in perioperative and emergency care, and was most recently NUM Endoscopy for St George Hospital in Sydney. Mary has also worked in project and research roles and holds postgraduate qualifications in Health Professions Education from UNSW and in Arts, and is a NSW Regional Committee member for the Gastroenterological Nurses College of Australia (GENCA).