Inflammatory Bowel Disease (IBD) – Ulcerative Colitis

Understanding Ulcerative Colitis

Ulcerative Colitis is a form of inflammatory bowel disease that causes persistent inflammation within the large bowel and rectum. This inflammation develops when the body’s immune system becomes imbalanced, leading to swelling and redness inside the bowel lining. The resulting symptoms commonly include abdominal discomfort and diarrhoea, often containing blood and mucous.

While Ulcerative Colitis can develop at any stage of life, it most frequently first appears in people during their twenties and thirties. The condition is more prevalent in Western countries, though it is becoming increasingly common in developing nations as well. Australia has one of the highest rates of inflammatory bowel disease worldwide.

Recognising the symptoms

Common symptoms experienced by people with Ulcerative Colitis include diarrhoea with mucous and blood in the stool, abdominal pain, the urgent need to open the bowels, fatigue, reduced appetite and weight loss.

Symptoms tend to vary between individuals and also come and go over time, with the inflammation flaring up and then easing again in periods known as remission.

What causes Ulcerative Colitis?

The precise cause of Ulcerative Colitis remains unknown despite extensive research. Evidence indicates that genetic factors, infections and various environmental influences all play important roles. Research continues into the potential causes and risk factors for Ulcerative Colitis.

Ulcerative Colitis cannot spread from one person to another. Family members of people with Ulcerative Colitis face a slightly elevated risk of developing either Ulcerative Colitis or Crohn’s disease, but even when both parents have inflammatory bowel disease, their children still have more than a 60 per cent chance of not developing the condition.

Stress and dietary factors alone do not cause Ulcerative Colitis, although attention to both can significantly improve quality of life.

Understanding the differences between Ulcerative Colitis and Crohn’s Disease

Inflammatory bowel disease, commonly known as IBD, refers to two main conditions that cause ongoing inflammation within the digestive system: Crohn’s disease and Ulcerative Colitis. These two conditions affect the digestive tract in distinct ways, although their symptoms can overlap.

Ulcerative Colitis only affects the large bowel (the colon and rectum). The inflammation occurs only in the surface layers of the bowel lining, causing tiny open sores called ulcers to form. When only the rectum is involved, doctors sometimes refer to this as ulcerative proctitis or simply proctitis. When the entire colon shows signs of inflammation, the condition may be described as pan-colitis.

Crohn’s disease, in contrast, can affect any part of the digestive tract, from the mouth through to the anus. The inflammation extends through the full thickness of the bowel wall. Inflammation caused by Crohn’s disease may also affect other parts of the body, such as the eyes or joints.
In some cases, it may not be immediately clear whether you have Ulcerative Colitis or Crohn’s disease.

Who gets Ulcerative Colitis?

Current estimates suggest that approximately 75,000 Australians are living with inflammatory bowel disease. Ulcerative Colitis often develops between the ages of 15 and 30, though it can begin at any age. While uncommon, diagnoses are becoming increasingly frequent.

When to see your doctor

Seeing your doctor if you experience any symptoms of Ulcerative Colitis is important. Your doctor may refer you to a gastroenterologist (a specialist doctor) for diagnosis and treatment. If you have been diagnosed with Ulcerative Colitis, seeing your doctor for a check-up at least every six months is recommended.

How Ulcerative Colitis is diagnosed

Diagnosing Ulcerative Colitis often takes time because the symptoms can be non-specific. When symptoms and signs are severe, diagnosis usually occurs promptly, but delays are common in milder cases.

Generally, unless symptoms have persisted for more than eight weeks, doctors first need to exclude bowel infections or gastroenteritis, which may result from contaminated food or following prolonged antibiotic treatment. In milder cases without rectal bleeding or weight loss, irritable bowel syndrome is often initially suspected, as it occurs far more commonly than Ulcerative Colitis. Any abnormal test results, however, should guide the diagnosis away from irritable bowel syndrome.

Your doctor will ask about your symptoms and general health and will also examine you. Tests that help identify Ulcerative Colitis include blood tests, which may reveal a low red blood cell count, raised white cell or platelet count, and elevation in C-reactive protein (CRP) or Erythrocyte Sedimentation Rate (ESR), markers indicating inflammation in the body. Blood tests also prove useful for identifying complications such as iron deficiency or other vitamin and mineral deficiencies. Faecal specimens may require examination to exclude infection and assess inflammation severity.

Most people require examination of part of the bowel, either through direct inspection using a flexible tube inserted through the anus (colonoscopy or sigmoidoscopy). During colonoscopy, small tissue samples called biopsies may be taken from inside the bowel and examined under a microscope to look for signs of disease. Imaging tests such as x-ray, CT scan or MRI scan may also be recommended.

No single test can reliably diagnose all cases of Ulcerative Colitis, and many people need several different tests. Depending on symptom severity, six to eighteen months commonly pass from first symptom onset until diagnosis is confirmed. In most cases, this delay does not lead to additional complications.

Treatment approaches

Treatment for Ulcerative Colitis aims to treat symptoms, reduce inflammation and help prevent complications. Treatment options involve medications, surgery, nutritional supplements or a combination of therapies, depending on disease location and severity.

Medications

Medications play a crucial role in achieving and maintaining remission, meaning freedom from symptoms and gut healing. The response to each medication differs between individuals, and many people require a combination of different drugs working together.

Various types of medications are available to address different aspects of Ulcerative Colitis. Some medications work by reducing inflammation directly in the bowel lining, helping to heal the ulcerated tissue and prevent further damage. These anti-inflammatory treatments can be taken by mouth or delivered directly to the affected area of the bowel through suppositories or enemas, which can be particularly effective when inflammation is limited to the lower part of the colon or rectum.

Other medications work more rapidly to control severe inflammation. These potent anti-inflammatory drugs can quickly reduce swelling and ease symptoms during flare-ups. However, due to potential side effects with prolonged use, they are typically reserved for short-term treatment during active disease. Starting or stopping these medications suddenly without first discussing with your doctor is not advisable.

For ongoing management, medications that modulate the immune system’s response play an important role. Since Ulcerative Colitis involves an imbalanced immune reaction, these medicines help to dampen the overactive immune response that drives the inflammation. Some of these immunosuppressive treatments take several months to reach their full effect, but they are valuable for maintaining long-term remission. Regular blood test monitoring is important when taking these medications to watch for possible side effects.

For people with moderate to severe Ulcerative Colitis who have not responded adequately to other treatments, advanced targeted therapies are available. These sophisticated medications work by blocking specific proteins or cells involved in the inflammatory process. Because they target inflammation very precisely, they can often induce gut healing more quickly. These treatments typically require injection, either under the skin or into a vein, and government subsidies may not be available for all patients. Many new therapies are currently under research and will become available in the near future.

Additional medications may be prescribed to manage specific symptoms or complications. Antibiotics help prevent or treat infections that can arise from disease complications. Medications to control diarrhoea may be helpful during flare-ups, though these should only be used for short periods. For pain management, paracetamol can be used safely, but certain pain relievers such as anti-inflammatory drugs and strong opioid medications should be avoided as they can worsen the disease.

The choice of which medications to use depends on the extent and severity of your Ulcerative Colitis, how you respond to treatment, and whether you have experienced any side effects. Your gastroenterologist will work with you to find the most effective treatment approach for your individual situation.

The importance of taking medications regularly

Medications need to be taken regularly for the long term to control inflammation. If you don’t take medications as prescribed, even though you may feel briefly well, significant symptom flares and complications can result, affecting quality of life in the long term. However, some patients can have their dose reduced or be weaned off medications if disease is under good control, the bowel has healed, and after consultation with your treating specialist.

If you feel unwell while taking medications, rather than simply stopping them, talk to your specialist about ways to reduce side effects. Most medications are safe to take during pregnancy and breastfeeding, but this should be discussed with your specialist.

Surgery

If Ulcerative Colitis is severe or does not respond to medicines, your doctor may recommend surgery to remove the colon. This operation is known as a total colectomy. A pouch is then created inside the body using the end of the small intestine (known as an ileal pouch), which is connected directly to the anus.

Another option is to create a temporary or permanent stoma. This is an artificial opening in the abdominal wall that diverts faeces into a bag outside the body. It is normal to feel uneasy about the idea of living with a stoma, but many people find it greatly improves their quality of life.

As Ulcerative Colitis only affects the colon, it is considered cured after the colon is removed, but you are still likely to need regular medical follow-up to manage your ileal pouch or stoma.

Nutritional therapy and diet

In general, most people with inflammatory bowel diseases are recommended to follow a healthy balanced diet without any special restrictions. Research continues into whether particular diets might worsen or improve symptoms of inflammatory bowel diseases.

Some people with inflammatory bowel diseases develop nutritional deficiencies. Your doctor or dietitian may recommend that you take dietary supplements to boost your levels of iron, calcium or certain vitamins.

Some foods can trigger symptoms for different people, so certain dietary changes may help improve symptoms. For example, spicy or fatty foods and foods with high fibre content (such as some fruits, vegetables, nuts and wholemeal grains) can worsen symptoms. Your doctor or dietitian may have specific dietary advice based on your situation.

When active disease is present, sometimes particular nutrients are difficult for the inflamed gut to absorb. After blood tests, some people may need to take vitamin tablets or require vitamin B12 injections or an iron infusion.

Emotional support

As with other illnesses, stress may worsen symptoms, so stress management and emotional support may help in combination with medical treatment. Speaking to your doctor, psychologist or psychiatrist about what management would be best for you is worthwhile. Joining inflammatory bowel disease support groups locally or through online communities may also prove helpful.

Living well with Ulcerative Colitis

The vast majority of people with Ulcerative Colitis lead normal lives, even though they need to take medications. When their disease is in remission, they feel well and are usually free of symptoms. People with Ulcerative Colitis can marry, engage in sexual activity and have children. They can hold down jobs, care for families and enjoy sport and recreational activities. With current medical treatment, life expectancy is normal.

Special considerations

Pregnancy

Ulcerative Colitis has no direct effect on fertility in either males or females. The single most important factor for a successful pregnancy and delivery is having your Ulcerative Colitis under control before attempting to become pregnant and during pregnancy. Poor outcomes usually result from active disease, not from medications. Therefore, discussing with your specialist before attempting pregnancy and continuing your medications unless a decision is made with your doctor to cease them is important.

Travelling

Whether going on a short or long trip, travelling with Ulcerative Colitis can present special challenges such as risk of flare, infections and travelling with certain medications. Sometimes medications can suppress your immune system, so caution is required when travelling to places with high infection risks. Talking to your doctors and planning ahead is essential.

Vaccination

People with Ulcerative Colitis may face increased risk of infection because of immune suppressive medications. Some of these infections are preventable with timely vaccination, such as flu vaccination. However, live vaccinations should be avoided. Talking to your doctor about vaccination if you are not already up to date with your vaccination schedule is recommended.

Screening for cancer

Being more diligent with cancer screening compared with the general population is important. Ensuring you are up to date with skin checks and cervical screening is advisable. In the long term, Ulcerative Colitis is associated with an increased risk of developing bowel cancer. Your doctor will recommend bowel cancer screening with regular colonoscopies.

Smoking

While smoking is less strongly linked to Ulcerative Colitis than to Crohn’s disease, maintaining a smoke-free lifestyle supports overall health and wellbeing.

Other considerations

When starting new medications or undergoing any invasive procedures or surgery unrelated to your Ulcerative Colitis, letting your doctor know is important.

When to seek urgent medical attention

Severe abdominal pain, persistent vomiting accompanied by constipation, significant or new rectal bleeding, drastic changes in bowel movements, high temperature, severe fatigue or tiredness, weight loss, red itchy eyes, sores in the mouth, swollen and painful joints, or bumps or lesions on the skin all warrant urgent medical attention.

Preventing flare-ups

While you cannot prevent Ulcerative Colitis from developing, you can reduce your chance of flare-ups and complications by taking your medicines as prescribed and maintaining a healthy lifestyle. Regular follow-up with your doctor or specialist can help keep your symptoms under control.

Possible complications

Risk of bowel cancer

In the long term, Ulcerative Colitis is associated with an increased risk of developing bowel cancer. Your doctor will recommend bowel cancer screening with regular colonoscopies.

Dietary deficiencies

It is possible to develop vitamin or mineral deficiencies or become malnourished. Your doctor or dietitian can advise you on managing these.

Risk of Osteoporosis

People with inflammatory bowel diseases often have many risk factors for developing osteoporosis, including poor nutrition, low body mass index, chronic inflammation and treatment with corticosteroids. To manage your risk, your doctor may recommend screening for osteoporosis with regular bone density scans.

Support and further information

Our Brisbane-based Gastroentrologists have extensive experience in diagnosing and managing Ulcerative Colitis. We provide comprehensive care tailored to each patient’s individual needs, working closely with your GP to ensure the best possible outcomes.

For additional support and information, Crohn’s and Colitis Australia provides valuable resources and can be contacted on their IBD helpline (phone 1800 138 029). The Gastroenterological Society of Australia also offers patient education resources. For information about living with a stoma, the Australian Council of Stoma Associations provides support. To find an accredited practising dietitian, the Dietitians Association of Australia can help.

If you are experiencing symptoms or have concerns about Ulcerative Colitis, please contact our rooms to arrange a consultation with one of our gastroenterologists.

This information has been sourced and adapted from education resources developed by Health Direct Australia and GESA.