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Crohns disease Information for patients Colorectal Surgery Department, William Harvey Hospital Ashford What is Crohns disease? Crohns disease is a chronic inflammatory process primarily involving the bowels. Although it may involve any part of the bowel from the mouth to the anus, it most commonly affects the last part of the small bowel (ileum) and/or the large intestine (colon and rectum). Please see the diagram below. Crohns disease is a chronic condition and may present at various times over a lifetime. Some people have long quiet periods, sometimes for years, when they are free of symptoms. There is no way to predict a quiet period or when symptoms will present. What are the symptoms of Crohns disease? Because Crohns disease can affect any part of the bowel, symptoms may vary greatly from patient to patient. Not all patients experience all of the symptoms, and some may experience none of them. Common symptoms Cramping - tummy pains Diarrhoea Less common symptoms Back passage pain or discharge Skin lesions Fever Weight loss Bloating Abscess or fistula* Fissure (split in anal skin) Joint pain * Fistula is an abnormal communication between the inside and the outside of the bowel which leads to leakage of bowel contents to the outside. Who does it affect? Any age group may be affected, but the majority of patients are young adults between 16 and 40 years old. Crohns disease occurs most commonly in people living in northern climates. It affects men and women equally and appears to be common in some families. About 20% of people with Crohns have a relative, most often a brother or sister, and sometimes a parent or child, with some form of inflammatory bowel disease. Crohns disease and a similar condition called ulcerative colitis are often grouped together as inflammatory bowel diseases. What causes Crohns disease? The exact cause is not known. However, current theories centre on an immunological (the body’s defence system) and/or bacterial cause. Crohns disease is not contagious, but it does have a slight genetic (inherited) tendency. An x-ray study of the small intestine may be used to diagnose Crohns disease. How is Crohns disease treated? • Medication Initial treatment is almost always with medication. There is no cure for Crohns disease, but medical therapy with one or more drugs provides a means to treat early Crohns disease and relieve symptoms. The most common drugs prescribed are steroids, such as predisolone and methylpredisolone, and various anti-inflammatory agents. Other drugs occasionally used include 6-mercaptopurine and azathioprine, which suppress the body’s defences. Metronidazole, an antibiotic with immune system effects, is frequently helpful in patients with anal disease. Recently a new drug called Infliximab has been tried in cases of complicated Crohns disease. Crohns disease, September 2015 2 • Diet Changing the form in which nutrients are delivered can help symptoms. Replacing normal diet with liquid feed can be as effective as drug therapy. If nutritional therapy is considered appropriate for you, you will be referred to the Dietitian for the management of your special liquid diet. • Surgery In more advanced or complicated cases of Crohns disease, surgery may be recommended. Emergency surgery is sometimes necessary when complications, such as bowel perforation, blockage, or significant bleeding occur. Other less urgent indications for surgery may include abscess and fistulas, severe back passage disease, or persistence of the disease despite appropriate drug treatment. Not all patients with these or other complications require surgery. This decision is best reached through consultation with your Gastroenterologist and your Colorectal Surgeon. What is the aim of surgery? The aim of surgery is to resect as much affected bowel as possible without compromising the intestinal function. For instance, if the right colon is involved with Crohns and there is obstruction or fistula, the surgeon will remove the right colon in an operation called right hemicolectomy. If the left side is involved, it may be necessary to remove the entire colon. If the small bowel is involved, the resection is confined to the affected area only, ensuring that adequate length of small bowel is left to serve vital functions of absorption of food. The aim of surgery in Crohns is not only to remove the offending part adequately, but also to ensure that the join in the bowel is wide enough to ensure easy passage of food stuff. There is some evidence that if the join is not wide enough, there is likely to be stagnation of food which may lead to the pathology coming back early. Nutrition is all important in Crohns. The protein levels often drop and it is imperative that surgery is carried out after the protein levels in the blood are restored. This may mean a period before surgery of nutrition either through a fine tube in the stomach (passed through the nose) or directly into the blood stream. How succesful is surgery for Crohns disease? By the very nature of the pathology, complications are high. Chances of Crohns disease coming back in the area removed could be as high as 50% after a right hemicolectomy. Leaks from the anastomosis (join in the bowel) are also high. Very often, it becomes necessary to re-operate soon after the first operation for collections of pus. An average person with Crohns is likely to have undergone three operations on the intestines in their lifetime. Should surgery for Crohns disease be avoided at all costs? While it is true that medical treatment is preferred as the initial form of therapy, it is important to realise that surgery is eventually required in up to three quarters of all patients with Crohns disease. Many patients have suffered unneccessarily due to a mistaken belief that surgery for Crohns disease is dangerous or that it inevitably leads to complications. Crohns disease, September 2015 3 Surgery is not a cure, although many patients never require additional operations. A conservative approach is frequently taken, with a limited resection of intestine (removal of the diseased portion of the bowel) being the most common procedure. Surgery often provides effective long-term relief of symptoms and frequently limits or eliminates the need for ongoing use of prescribed medications. Where can I find more information? • National Association of Colitis and Crohns disease (NACC) - www.nacc.org.uk Any complaints, comments, concerns, or compliments If you have other concerns please talk to your doctor or nurse. Alternatively please contact our Patient Advice and Liaison Service (PALS) on 01227 783145 or 01227 864314, or email [email protected] Further patient information leaflets In addition to this leaflet, East Kent Hospitals has a wide range of other patient information leaflets covering conditions, services, and clinical procedures carried out by the Trust. For a full listing please go to www.ekhuft.nhs.uk/patientinformation or contact a member of staff. After reading this information, do you have any further questions or comments? If so, please list them and bring to the attention of your nurse or consultant. Would you like the information in this leaflet in another format or language? We value equality of access to our information and services and are therefore happy to provide the information in this leaflet in Braille, large print, or audio - upon request. If you would like a copy of this document in your language, please contact the ward or department responsible for your care. Pacjenci chcący uzyskać kopię tego dokumentu w swoim języku ojczystym powinni skontaktować się z oddziałem lub działem odpowiedzialnym za opiekę nad nimi. Ak by ste chceli kópiu tohto dokumentu vo vašom jazyku, prosím skontaktujte nemocničné pracovisko, alebo oddelenie zodpovedné za starostlivosť o vás. Чтобы получить копию этого документа на вашем родном языке, пожалуйста обратитесь в отделение, ответственное за ваше лечение. We have allocated parking spaces for disabled people, automatic doors, induction loops, and can provide interpretation. For assistance, please contact a member of staff. This leaflet has been produced with and for patients Information produced by the Colorectal Surgery Department, William Harvey Hospital Ashford Date reviewed: September 2015 Next review date: September 2017 Web 180