The following information is sourced from Crohn’s & Colitis Australia’s website.
If you have recently been told you have ulcerative colitis or Crohn’s disease, your first reaction may have been shock that you have an illness which could affect you for the rest of your life. You may also have felt some relief that at last you have an explanation for the way you are feeling. There are probably many questions running through your mind. We hope this information will help you to understand more about your condition, how you can help yourself, and the sort of treatment you will receive.
What is inflammatory bowel disease?
Inflammatory bowel disease (IBD) is a term used to describe two diseases, ulcerative colitis and Crohn’s disease, which cause inflammation of the bowel. Ulcerative colitis causes inflammation of the inner lining of the large bowel (colon and rectum).
Crohn’s disease causes inflammation of the full thickness of the bowel wall and may involve any part of the digestive tract from the mouth to the anus (back passage). Most frequently the ileum, which is the lower part of the small bowel (ileitis), the large bowel (colitis) or both (ileo-colitis) are involved.
Sometimes people get confused between inflammatory bowel disease (IBD) and the irritable bowel syndrome (IBS). The two conditions are quite different and so are their treatments.
What causes ulcerative colitis and Crohn’s disease?
Despite a great deal of research, the cause of ulcerative colitis and Crohn’s disease is unknown. Some scientists believe IBD may be due to a defect in the body’s immune system (its natural protection against diseases), while others believe that bacteria or even viruses might play some role. However, there is no evidence that ulcerative colitis or Crohn’s disease is contagious. Relatives of people with IBD have a slightly greater risk of developing either disease. Stress or diet are not thought to cause IBD. Both diseases are more common in the Western world.
Who gets IBD?
IBD often develops between the ages of 15 and 30 but can start at any age; it is uncommon in children. It is estimated that about 61,000 Australians have IBD; approximately 28,000 have Crohn’s disease and 33,000 have ulcerative colitis.
What are the symptoms of IBD?
People with either disease can develop pain in the abdomen, weight loss, diarrhoea (sometimes with blood and mucus) and tiredness. Some people may also experience fever, mouth ulcers or nausea and vomiting. People with Crohn’s disease of the anus can experience pain (especially while passing a bowel motion) or an itch. A few people have disease affecting other parts of the body and may experience swollen joints, inflamed eyes, skin rashes or jaundice (yellow colour of the skin). The symptoms and their severity vary from person to person and may flare up or improve over time. Many people will experience periods of remission when they are completely free of symptoms. With current medical treatment, life expectancy is normal.
What tests are used to confirm the diagnosis of ulcerative colitis or Crohn’s disease?
The diagnosis of Crohn’s disease or ulcerative colitis is sometimes delayed as the same symptoms can occur with other diseases. It is usually necessary to exclude diseases such as bowel infections or the irritable bowel syndrome.
Blood tests are useful to look for anaemia (low blood count) and to measure the severity of inflammation. They can also detect vitamin or mineral deficiencies. A faeces (bowel motion) specimen may be required to exclude infection. Most people require an examination of part of the bowel, either by direct inspection through a flexible tube inserted through the back passage (colonoscopy or sigmoidoscopy) or mouth (gastroscopy), or by x-rays, include CT scan and barium small bowel series (where dye swallowed and x-rays taken). There is no one test that can reliably diagnose all cases of IBD, and many people require a number of tests.
How is IBD treated?
The type of treatment you will be offered depends on whether you have ulcerative colitis or Crohn’s disease, the extent of the disease, and the effect of the symptoms on your daily life.
Ulcerative colitis
The treatment of ulcerative colitis depends on the amount of the large bowel affected and the severity of the inflammation. A mild attack may be treated with drugs given directly into the rectum through the back passage (eg. by an enema or suppositories) if the disease is confined to the lower part of the bowel. Mesalazine is also usually taken by mouth. Mesalazine can be given in several alternative forms and these include sulphasalazine (Salazopyrin), coated mesalazine (Mesasal, Salofalk Granules) or olsalazine (Dipentum). Steroid tablets (usually prednisolone) may be required if the inflammation is more severe or if more of the bowel is involved. Occasionally anti-diarrhoeal drugs (e.g. Loperamide (Imodium) or Lomotil (diphenoxylate and atropine) may be helpful.
Most people in remission are advised to take a drug to reduce the chance of a relapse; this is called maintenance therapy. Mesalazine in one of its forms (as outlined above) is usually effective for maintenance. Azathioprine (Imuran or Thioprine) or 6-mercaptopurine (Puri-Nethol), drugs that reduce the activity of the body’s immune system, may sometimes be used if colitis is difficult to control. For more severe attacks treatment in hospital with steroid given directly into a vein may be required. If drug therapy is not effective, surgery to remove the large bowel (rectum and colon) may be recommended. If this is done the disease is cured. Your doctor will fully discuss the surgical options available to you and there will be time to talk with a stoma-care nurse or another person who has already undergone an operation for ulcerative colitis.
Crohn’s Disease
The drugs used to treat Crohn’s disease are the same as those used for ulcerative colitis. However, drugs that suppress the immune system (especially azathioprine, 6-mercaptopurine or methotrexate) are more commonly used to help control the inflammation and as maintenance therapy. Active Crohn’s disease is generally treated with steroid tablets (usually prednisolone).
Sometimes, antibiotics are also used. Where drug therapy is ineffective, an infusion into the vein of infliximab (Remicade), (an antibody that mops up an important protein made by the body during inflammation), may be used.
In contrast to ulcerative colitis, it is not possible to remove all of the bowel that may be affected by Crohn’s disease, so the disease cannot be cured by surgery. However, some people do require surgery if drug treatment is ineffective, or if Crohn’s disease causes a blockage or leak in the bowel. Surgery may also be necessary for people with Crohn’s disease of the anus that which is not responding to tablets.
You can obtain more detailed information about the drugs used in the treatment of ulcerative colitis and Crohn’s disease from the ACCA/DHF publication “Drugs and Inflammatory Bowel Disease”, and more information on surgery from the ACCA/DHF publication “Surgery and Inflammatory Bowel Disease”. You can also get more information about the drugs used on the GESA website, http://www.gesa.org.au/
How important is diet?
Eating a healthy balanced diet is important if you have Crohn’s disease or ulcerative colitis. It is particularly important to eat enough to prevent weight loss. Some people are advised to take nutritional supplements to maintain their weight. If you find that you can eat a normal mixed balanced diet without any ill effects, then continue to do so.
There is no evidence that ulcerative colitis or Crohn’s disease are due to food allergies. You may find that some foods seem to make your diarrhoea worse, particularly foods with a high fibre content (eg. fruits, vegetables, nuts and wholemeal grains), spicy foods or fatty foods. If so, it is sensible to reduce the amount of these foods in your diet, during a flare up.
A few people with Crohn’s disease are unable to absorb particular nutrients. These individuals may need to take vitamin or mineral tablets. Some require an injection of vitamin B12 every 3 months. Nutritional deficiency is uncommon in people with ulcerative colitis, although blood loss can lead to anaemia (a low blood count), which may require iron tablets. However, there is no evidence to suggest that extra vitamins or special food supplements are necessary or helpful for most people with Crohn’s disease or ulcerative colitis.
IBD in children?
IBD is uncommon in children but does occur. Children with IBD develop the same symptoms as adults. However, untreated IBD can lead to delayed or impaired growth and it is important to keep inflammation under control to prevent this. The treatment of children with ulcerative colitis or Crohn’s disease is very similar to that of adults with inflammatory bowel disease.
Can people with IBD lead a normal life?
People with IBD lead useful and productive lives, even though they need to take medications. When their disease is inactive, they feel quite well and are usually free of symptoms. People with IBD can marry, engage in sexual activity and have children. They can hold down jobs, care for families and enjoy sport and recreational activities. In short they can lead normal lives.
Even though there is no cure for IBD, current medical therapy has improved the health and quality of life of most people with ulcerative colitis and Crohn’s disease. There is good reason to believe that research underway today will lead to further improvements in medical and surgical treatment of inflammatory bowel disease.
Prepared by Crohn’s & Colitis Australia in collaboration with the Gastroenterological Society of Australia Digestive Health Foundation (DHF)
