Coloproctology Unit. NHS Foundation Trust. Ulcerative Colitis. Every. Matters 1

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1 Coloproctology Unit NHS Foundation Trust Ulcerative Colitis Every Matters 1

2 What is it? Ulcerative colitis is a form of inflammatory bowel disease that affects the lining of the large bowel (colon) and back passage (rectum). It is a disease that has no permanent cure but is treatable. This lining becomes inflamed and ulcerated and is in some ways like eczema of the skin - red and swollen with the surface broken and weeping. The inflammation may be limited to the rectum (proctitis) but it may gradually move upwards and very occasionally when the disease has affected the whole of the large bowel for more than ten years, bowel cancer may develop. What are the symptoms of Ulcerative Colitis? The disease can give trouble on and off throughout life. Most of the time, most sufferers feel well with no symptoms - this means the disease is inactive (in remission). The disease flares up from time to time and becomes active (relapse). At each flare-up the symptoms can be better, worse or the same as the time before. The main symptoms are: Frequent and urgent need to pass blood and mucus (slime from your back passage); there may be some stool as well; Diarrhoea in more severe cases; Abdominal pain, often just before a stool is passed; A general feeling of tiredness. Occasionally, other symptoms occur and these may include reddening of the eyes, joint pain, skin lesions, growth impairment in children, loss of appetite, irritability and depression. 2

3 What causes the disease to relapse? Normally, there is no obvious cause for a relapse. In a few cases a triggering even can be identified - this is not the cause of the disease. For example: Personal stress or worry; Common infections (colds, flu, gastroenteritis); Some drugs (e.g. antibiotics, aspirin and anti-arthritis drugs); Diet: some patients may react to milk products, in which case they will need a milk-free diet. Some sufferers find that certain foods, such as cereals can cause problems. These foods can be cut out and tried again later. Why do I have Ulcerative Colitis? No one knows why particular people develop ulcerative colitis but research has identified some tendencies of the disease: It affects both men and women and can occur at any age, but often begins in the teenage years It occurs most frequently amongst Western European and North American people There is a small increased risk that close relatives of patients may suffer from the illness more commonly than the rest of the population Stressful, emotional event are occasionally linked with the onset of the disease or recurrence of symptoms Allergy may play a part and there is often a background of asthma or eczema. How is Ulcerative Colitis Diagnosed? To make a diagnosis of ulcerative colitis you will have blood tests and it is essential to examine the back passage and colon with a 3

4 lighted tube. It may be a short tube (sigmoidoscope) or a longer soft tube (flexible sigmoidoscope or colonoscope) which allows direct examination of the lining of the bowel. The procedure may be carried out under sedation. Often a tiny portion of tissue (biopsy) is taken from the lining of the bowel for laboratory examination. This is painless. The bowel can be examined by a barium enema X-ray. This examination shows details of the extent and severity of the inflammation. Your doctor may wish to do other tests on the basis of the findings of the initial examinations. When is surgery Necessary? With ulcerative colitis most people never need an operation. The colon may have to be removed if: A very severe attack of ulcerative colitis fails to respond to intensive medical treatment Repeated attacks cause ill-health Pre-cancerous changes are found in the colon What operations are available for ulcerative colitis? There are several operations available for the surgical treatment of ulcerative colitis. All of these operations involve the removal of the large bowel. For some patients a proctocolectomy with an ileal pouch is suitable. This involves removal of the entire large bowel and the formation of a pouch to replace the rectum. The pouch is made from a segment of the small bowel and joined to the anus. The operation is often done in stages. This means that a part of the remaining small bowel (ileum) is brought through the abdominal wall onto the tummy as a spout (ileostomy), which drains into a small plastic bag. When the pouch has healed the bowel is then reconnected such that the spout is put back into the abdomen. 4

5 For some patients including those who do not have good working muscle around the back passage, the most suitable operation is proctocolectomy. This is where the whole colon and rectum are removed and an ileostomy is formed. Specialist nurses train the patient in how to care for the ileostomy. The ileostomy bag lies flat on the abdomen. It does not show even through bathing costumes. It should not interfere with any activities, including sexual intercourse. Other operations, sometimes appropriate, include subtotal colectomy with ileostomy and mucus fistula, ileorectal anastomosis or ileostomy (loop or split). No operation is perfect. Each has advantages and disadvantages. In each case, the choice of operation has to be made on an individual basis by the patient and surgeon. Although it is a big step to have an operation, it does mean that ulcerative colitis is cured permanently. Patients who are sufficiently ill to need surgery usually notice a great improvement in their general health after the operation. However, some may have to take medication (e.g. loperamide) to reduce frequent bowel movement. Do I need a special diet? Most patients with ulcerative colitis can eat a full normal diet. However some foods may make diarrhoea worse and are best avoided. In those cases where milk seems to make the illness worse,, this may be excluded from the diet. Patients who have undergone surgery may require a special diet. Are there any alternative therapies? Most alternative approaches use dietary modification such as the exclusion of milk products. Scientific investigation of their value has not yet been undertaken. 5

6 Living with inflammatory bowel disease? During remission, there are no restrictions on lifestyle. Feelings and emotions Inflammatory bowel disease is not caused by the emotional character of a person. The condition is obviously distressing at time and may lead to anxiety or depression when a sufferer has diarrhoea, pain and has to rush to the toilet. Accidents can occur (incontinence) and it is important that patients are prepared for them by taking precautions. Extra underwear, pads and toilet tissue should be available when the disease is active and patients should always be aware of the location of the nearest toilet. You may wish to explain to friends and people at work that you have a problem with the bowel which means you have to rush to the toilet very suddenly. You may be able to obtain RADAR keys and no waiting cards which will enable you to access toilet facilities urgently. These should be obtainable through your specialist nurse. Pregnancy Women with ulcerative colitis have normal fertility. Because of this together with the fact that in ulcerative colitis some drugs are not properly absorbed women taking an oral contraceptive pill may be at risk of pregnancy. Sulphasalazine can cause men to become less fertile. Fertility usually returns to normal when the drug is stopped. If possible, women who want children should try to get pregnant when the disease is in remission. Flare-ups can occur during pregnancy but they are usually mild and will respond to medical treatment. Clincial experience has shown that the risk from steroids and suphasalazine to the baby is extremely low. Some doctors advise women to avoid pregnancy while on azathioprine because of 6

7 theoretical risks, though many successful pregnancies have been recorded while taking the drug. Diet In general people with inflammatory bowel disease can eat what they like but it is important to maintain weight in adults and a normal rate of growth during childhood and adolescence. In a few people, milk can make symptoms worse, but the majority of sufferers can take milk products without harm. Children with inflammatory bowel disease need extra nutrition to keep them growing properly. Can inflammatory bowel disease lead to cancer? Yes, but the circumstances under which this occurs are well understood. The risks are only substantial in patients with ulcerative colitis if their disease affects most of, or the whole, colon and has been present for many years. It is sometimes possible to detect warning changes (dysplasia) in the bowel before cancer develops. Some doctors advise patients at risk to have regular annual colonoscopic examinations to detect such changes. If they found, the person is advised to have the colon removed. The cancer risk can be one factor to be taken into account when deciding whether an operation should be advised for long standing colitis. Can my friends and relatives catch my diarrhoea? There is no evidence that ulcerative colitis can be passed on to others. Do many other people have this illness? Perhaps as many as 80,000 to 100,000 people in Britain have ulcerative colitis. 7

8 Does ulcerative colitis affect my eligibility for life insurance? It may do so. Many companies put extra weighting on their premiums and if you have ulcerative colitis or proctitis it is worth shopping around. Am I eligible for additional help from the government? Yes. You may be eligible for financial help with special diets. Season tickets for the purchase of medications may be worth considering. Ask your specialist nurse about these options. Can I travel abroad and receive treatment? You should be able to enjoy foreign travel, but it is worth checking with your own doctor about where to obtain treatment in other countries. You should also ensure that you have adequate medical insurance and that the insurance company is aware of your condition. It may be helpful to carry a doctor s letter explaining your medical details. Great care should be taken in the use of antidiarrhoeal or constipating agents. They should only be used on your doctor s advice. Where can I go for more help? There are several organisations which are concerned with people who have ulcerative colitis. 8

9 National Association for Colitis and Crohn s Disease (NACC) 98a London Road St. Albans Hertfordshire AL1 1NX Tel (Answer phone): Ileostomy Association of Great Britain and Ireland PO Box 23 Mansfield Nottinghamshire NG18 4TT Tel: Are other parts of the body ever affected? Mouth ulcers are common. Less commonly: the skin may be affected with warm, red tender lumps (erythema nodosum) or, very rarely, ulceration (pyoderma) usually on the legs; pain and swelling may occur in the joints (arthritis), lower back (sacro-iliitis), or stiffening in the spine (ankylosing spondylitis); Inflammation may also rarely involve; - the liver (hepatitis) - bile ducts (sclerosing cholangitis) - eye (episcleritis, iritis, uveitis) making them red and painful; - children with severe disease may grow at a reduced rate It is not normal for the symptoms of ulcerative colitis to make you feel depressed. 9

10 How is ulcerative colitis treated? Ulcerative colitis can be cured by surgical removal of the large bowel. However, for most patients the disease can be controlled by drugs. Steroids such as prednisolone are often prescribed for moderate to severe attacks of ulcerative colitis to damp down the inflammation. These steroids are not the same as those taken illegally by athletes. Their side effects may include increased appetite, moodiness and puffiness of the face. Once the disease is controlled however the dose is reduced and then stopped. These changes may well disappear when the steroid treatment stops. Steroids may be given as tablets by mouth, enemas, rectal foams or suppositories via the back passage. Severe attacks will be treated in hospital with steroids given via a vein into the blood stream. Another drug, cyclosporin, is sometimes given with intravenous steroids. Sulphasalazine, mesalazine or olsalazine are often given during an attack and for long-term use to keep the disease in remission. These drugs may be given as tablets, enemas or suppositories. Azathioprine is used for a few patients with long term active disease who would otherwise need repeated courses of steroids. If only the rectum is inflamed, treatment may just be with enemas, rectal foams or suppositories. 10

11 Question? Make a note here 11

12 The Association of Coloproctology of Great Britain and Ireland The Association s website has information for patients about a variety of bowel conditions at Coloproctology Unit Leighton Hospital Middlewich Road Crewe, Cheshire CW1 4QJ Tel: Colorectal Nurse Specialist Tel: (direct dial) This leaflet is available in audio, large print, braille and other languages. To request a copy telephone Printed on certified PEFC paper. Sourced from sustainable forests. IMPRESSIONS DESIGN & PRINT Revised and reprinted May 2008 Review May 2009 Ref: SC/SURG/