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First Edition 2007 CROHN’S DISEASE & ULCERATIVE INFLAMMATORY BOWEL DISEASE (IBD)

If you have recently been told you have What causes and inflamatory bowel disease (IBD) there are Crohn’s diseases? probably many questions running through your Despite a great deal of research, the precise mind. We hope this leaflet will help you causes of ulcerative colitis and Crohn’s disease understand more about your condition, how are unknown. There is evidence, however, that you can help yourself, and the treatment you genetic, environmental, immunological and may receive. infectious (bacterial) factors are all involved to a degree, and it may be their interaction in What is inflammatory bowel disease susceptible people that causes IBD to develop. or “IBD”? There is no evidence that ulcerative colitis Inflammatory bowel disease (IBD) is a term used or Crohn’s disease is a contagious disease. to describe two main diseases, ulcerative colitis Relatives of people with IBD have a slightly and Crohn’s disease, which cause inflammation greater risk of developing either disease. of the bowel. This inflammation is thought to be Stress and/or diet alone are not thought to cause due to dysfunction of your immune system, and IBD, although attention to both these factors is is not due to an . likely to improve your quality of life with IBD.

Both diseases are more common in the Western INFLAMMATORY BOWEL DISEASE (IBD) Ulcerative colitis causes inflammation of only world, although their incidence is also rising is a term used to describe two main the inner lining of the large bowel (colon and in developing countries diseases, ulcerative colitis and ). When only the rectum is involved it is Crohn’s disease. sometimes called ulcerative or just Who gets IBD? proctitis. When the entire colon is involved it is IBD often develops between the ages of 15 experience swollen joints, inflamed eyes, skin sometimes called pan-colitis. and 30 but can start at any age; it is uncommon rashes or (yellow discolouration of the in children. It is slightly more common in women skin). The symptoms and their severity vary from Crohn’s disease causes inflammation of the full in Australia than in men. It is estimated that person to person and may flare up or improve thickness of the bowel wall and may involve any about 61,000 Australians have IBD; over time. Many people will experience periods part of the digestive tract from the mouth to the approximately 28,000 have Crohn’s disease of remission when they are completely free of anus (back passage). Most frequently the , and 33,000 have ulcerative colitis. symptoms. With current medical treatment, life which is the last part of the small bowel, the expectancy is normal. large bowel (or colon) or both are involved. What are the symptoms of IBD? These patterns of disease location are referred People with either disease can develop pain in What tests are used to confirm the to as , colitis and ileo-colitis respectively. the , diarrhoea (loose and/or frequent diagnosis of ulcerative colitis or bowel motions, sometimes with blood and Crohn’s disease? Sometimes people get confused between mucous), tiredness and . Some The diagnosis of Crohn’s disease or ulcerative inflammatory bowel disease (IBD) and irritable people may also experience fever, mouth ulcers colitis is often delayed as the same symptoms bowel syndrome (IBS). The two conditions are or and . People with Crohn’s can occur with other diseases. It is usually quite different and so are their treatments. The disease of the anus can experience pain necessary to exclude other diseases such as two conditions (IBD & IBS) can, however, occur (especially while passing a bowel motion) bowel (which may occur from in the same person. IBS is discussed in other or an itch around the anus. A few people have contaminated food or after a prolonged course literature available from the DHF. disease affecting other parts of the body and may of ) or .

An information leaflet for patients and interested members of the general public prepared by the Digestive Health Foundation Tests which help point towards a diagnosis involved. Occasionally anti-diarrhoeal medicines of IBD include blood tests which may show (e.g. loperamide (Imodium) or Lomotil) anaemia, raised white cell or platelet count and may be helpful, but these should not be used to elevation in CRP or ESR, which are markers of control new onset of diarrhoea, which may inflammation in the body. Blood tests are also indicate a flare of disease, without discussion useful to look for complications of IBD such as with your doctor. deficiency or other vitamin or mineral deficiencies. A faecal (bowel motion) specimen Most people in remission (when the disease has may need to be examined to exclude infection. settled down and the bowel movements and Most people require an examination of part of other symptoms have returned to normal) are the bowel, either by direct inspection through a advised to take a medicine to reduce the chance flexible tube inserted through the back passage of a relapse (a return of the symptoms); this is Colon ( or sigmoidoscopy) or mouth called maintenance therapy. Mesalazine in one of (gastroscopy), or by x-rays, which may include its forms (as outlined above) is usually effective Ileum CT or MRI scan and/or barium small bowel as maintenance treatment. Maintenance Rectum series (where dye is swallowed and x-rays are treatment has been shown to reduce the number taken). There is no one test that can reliably of flares, keeping you well for more of the time. diagnose all cases of IBD, and many people Crohn’s disease. Therefore, as long-term steroid require several tests. If your ulcerative colitis is difficult to control, therapy is not advisable because of the risk of with multiple flares or severe disease, medicines side-effects, immunomodulators (azathioprine, It is common for it to take 6-18 months from the that alter the activity of the body’s immune system 6-mercaptopurine or methotrexate) are used first onset of symptoms until a positive diagnosis may sometimes be used to settle ongoing both more commonly and earlier in Crohn’s of IBD is made. In most cases this delay does not inflammation and as maintenance treatment. disease compared to ulcerative colitis. These lead to any additional problems. These medicines are referred to as drugs are used both to help control the immunomodulator or immunosuppressant inflammation and as maintenance therapy. How is IBD Treated? drugs. Commonly used immunomodulators in These immunomodulators generally take some The type of treatment you will be offered depends ulcerative colitis include azathioprine (Imuran weeks to exert their full effect however, and on whether you have ulcerative colitis or Crohn’s or Thioprine) or 6-mercaptopurine (6-MP or because of this, active Crohn’s disease is disease, which part of your gut is affected and Puri-Nethol) and methotrexate. For the most generally initially treated with steroids how severe your disease is. There are also some severe attacks, treatment in hospital with steroids (prednisolone) either as tablets (if you are well opportunities for you and your doctor to choose given directly into a may be required. enough to be at home) or intravenously through between treatments that are similarly effective, but Sometimes with a severe attack, when a drip (if you are too sick to be at home and may have different actions and side effect profiles. intravenous steroids are not helpful, stronger msut stay in hospital). Sometimes, antibiotics are immunosuppressant drugs are used also used, especially if you have complications of Ulcerative colitis (UC) intravenously to prevent the need for surgery your disease. Where standard drug treatment is The treatment of ulcerative colitis depends on to remove the bowel. This is rarely required. ineffective, other, new generation therapies may the amount of the large bowel affected and the be used. These generally target the inflammation severity of the inflammation. If the disease is If drug treatment is not effective, surgery to of IBD more powerfully. These newer drugs are confined to the lower part of the bowel, a mild remove the large bowel (rectum and colon) may licensed for use in Australia but are expensive, attack may be treated with drugs (such as, be recommended. If this is done the disease is and government subsidy is not available for all mesalazine or steroids) given directly into the cured and cannot return. Your doctor will fully patients. Your doctor can discuss this with you rectum through the back passage (eg. by an discuss the surgical options available to you and in more detail if it is thought to be required. enema or suppositories). When more of the there will be time to talk with a specialist nurse bowel is affected, your doctor may suggest you or another person who has already undergone In contrast to ulcerative colitis, it is not possible take medicine by mouth. Medicines used to treat an operation for ulcerative colitis. to remove the entire bowel that may be affected IBD include sulphasalazine (Salazopyrin), by Crohn’s disease, so the disease cannot be coated mesalazine (Mesasal, Salofalk Granules cured by surgery. However, some people do Crohn’s disease and Tablets, Pentasa Tablets and Granules), require surgery if drug treatment is ineffective, The medicines used to treat Crohn’s disease are balsalazide (Colazide) or olsalazine (Dipentum). or if Crohn’s disease causes a blockage or leak in mostly the same as those used for ulcerative Steroid tablets (usually prednisolone) may be the bowel. Surgery may also be necessary colitis, however there are some differences. required if the inflammation is more severe for people with Crohn’s disease of the anus Medicines like mesalazine are of less benefit in or if more extensive amounts of the bowel are that is not responding to tablets. In Crohn’s disease, when surgery is performed, loss can lead to anaemia (a low blood count), This information booklet has been designed by the a conservative approach is generally adopted, which may require iron tablets. However, there is Digestive Health Foundation as an aid to people who to keep as much of the gut intact as possible. little evidence to suggest that extra vitamins have Ulcerative Colitis or Crohn’s Disease or for those who wish to know more about it. This is not meant to After an operation, your doctor may recommend or special food supplements are necessary or replace personal advice from your medical that you take maintenance therapy as this is helpful for most people with Crohn’s disease practitioner. shown to reduce the chance of the disease or ulcerative colitis. returning in the future. You should discuss The Digestive Health Foundation (DHF) is an this with your gastroenterologist. For more information on nutrition and diet in educational body committed to promoting better IBD, see the GESA leaflet entitled: Dietary Advice health for all Australians by promoting education and community health programs related to the You can obtain more detailed information about for Chronic Gastrointestinal Disease. digestive system. the medicines used in the treatment of ulcerative colitis and Crohn’s disease from the ACCA/DHF Inflammatory bowel disease in children The DHF is the educational arm of the publication “Drugs and Inflammatory Bowel IBD is uncommon in children but does occur. Gastroenterological Society of Australia, the professional body representing the Specialty of Disease”, and more information on surgery Children with IBD develop the same symptoms from the ACCA/DHF publication “Surgery and gastrointestinal and disease in Australia. as adults. However, untreated IBD can lead to Members of the Society are drawn from physicians, Inflammatory Bowel Disease”. You can also get delayed or impaired growth and it is important surgeons, scientists and other medical specialties more information about the medicines used on to keep inflammation under control to prevent with an interest in GI disorders. the GESA website, www.gesa.org.au this. The treatment of children with ulcerative colitis or Crohn’s disease is very similar to that of Since its establishment in 1990 the DHF has been involved in the development of programs to improve How important is diet? adults with IBD. Most people with IBD do not need a special community awareness and the understanding of digestive diseases. diet and can eat a healthy balanced diet. It is Can people with IBD lead a normal life? particularly important to eat enough to prevent The vast majority of people with IBD lead useful Research and education into gastrointestinal disease weight loss. Some people are advised to take and productive lives, even though they need to are essential to contain the effects of these disorders nutritional supplements to maintain their weight. take medications. When their disease is in on all Australians. If you find that you can eat a normal mixed remission, they feel well and are usually free balanced diet without any ill effects, then Further information on a wide variety of symptoms. People with IBD marry, engage of gastrointestinal conditions is available continue to do so. in sexual activity and have children. They hold on our website. down jobs, care for families and enjoy sport There is no evidence that ulcerative colitis or and recreational activities. Crohn’s disease are due to food allergies. You may find that some foods seem to make your Even though there is no cure for IBD, current diarrhoea worse, particularly foods with a high medical therapy has improved the health and fibre content (eg. fruits, vegetables, nuts and quality of life of most people with ulcerative wholemeal grains), spicy foods or fatty foods. colitis and Crohn’s disease. There is good reason If so, it is sensible to reduce the amount of to believe that research underway today will these foods in your diet. lead to further improvements in medical and surgical treatment of inflammatory A few people with Crohn’s disease are unable to bowel disease. absorb particular nutrients. These individuals may need to take vitamin or mineral tablets. Some require an injection of every 3 months. Nutritional deficiency is uncommon in people with ulcerative colitis, although blood

Digestive Health Phone (02) 9256 5454 This brochure is promoted as If you have further questions Foundation Fax (02) 9241 4586 a public service by the Digestive you should raise them with your Health Foundation. This leaflet own doctor. c/-GESA [email protected] cannot be completely comprehensive 145 Macquarie Street http://www.gesa.org.au and is intended as a guide only. The information given here is © Copyright. SYDNEY NSW 2000 current at the time of printing, Digestive Health Foundation, Australia but may change in the future. updated August 2007.