Information for the public Published: 1 October 2012 nice.org.uk About this information NICE guidelines provide advice on the care and support that should be offered to people who use health and care services. This information explains the advice about Crohn's disease that is set out in NICE guideline CG152. Information about treatment with infliximab and adalimumab was added in 2016. This information is in the section drug treatment for active Crohn's disease. Does this information apply to me? Yes, if you are an adult (18 years or older), child (11 years or younger) or young person (12 to 17 years) who has been diagnosed with Crohn's disease, or are a parent or carer of a person with Crohn's disease. Crohn's disease Crohn's disease is a long-term condition in which inflammation of the digestive system leads to diarrhoea, abdominal pain, tiredness and weight loss. Although any part of the digestive system can be involved, the disease usually affects the last part of the small intestine (distal ileum) or the large intestine (colon). There is no cure for Crohn's disease at the moment. People with Crohn's disease can go for long periods with few or no symptoms (this is known as remission). But this can be followed by a period of active disease when symptoms flare up (this is NICE 2012. All rights reserved. Last updated May 2016 Page 1 of 11
sometimes called an exacerbation). Symptoms can be mild, but are sometimes severe and can have a big effect on a person's day to day life. Crohn's disease can affect people of all ages. It usually develops between the ages of 10 and 30 or between 60 and 80. It is uncommon in children under 5. The causes are unknown, but family history and smoking are thought to play an important part. In adults the aim of treatment is to reduce symptoms or maintain remission. In children and young people treatment also aims to promote growth and development. Your care team A range of professionals who specialise in different areas of treatment or support may be involved in your care. These could include specialist doctors (including gastroenterologists and surgeons), GPs, specialist nurses, dietitians, psychologists and pharmacists. Working with you Your care team should talk with you about Crohn's disease. They should explain any tests and treatments you should be offered so that you can decide together what is best for you. Your family or carer can be involved in helping to make decisions, but only if you agree. If you are a child or young person your parent or carer may be involved in helping to make decisions depending on your age. There is a list of questions you can use to help you talk with your care team. You may also like to read NICE's information for the public on patient experience in adult NHS services. This sets out what adults should be able to expect when they use the NHS. We also have more information on the NICE website about using health and social care services. Some treatments or care described here may not be suitable for you. If you think that your treatment does not match this advice, talk to your care team. Information and support General information and support If you have Crohn's disease, you and your parents or carers (if appropriate) should be given information about your condition. The information should be easy to understand and should be suitable for your age. NICE 2012. All rights reserved. Last updated May 2016 Page 2 of 11
The information should also include existing advice from NICE about: stopping smoking what you can expect from good NHS care getting the most from your medicines fertility. See other NICE guidance for details of our guidance on these topics. You should be given information on the following when this is appropriate: diet and nutrition possible effects of the condition or treatment on fertility and sexual relationships how your disease might develop in the longer term the possibility of an operation risk of other conditions contact details for support groups. You should be offered support from your healthcare team to deal with any concerns about your condition and its treatment. These might include concerns about body image or living with a long-term condition. Children and young people If you are a child or young person, you and your family should be offered support from the healthcare team to deal with any concerns about growth and puberty, and attending school and higher education. If your care is being transferred to an adult service, you should be given information about the new service and how the transfer might affect your care. Women and girls If you are of child-bearing age, you should be given information about the possible effects of Crohn's disease on pregnancy. This should include the possible risks and benefits of drug treatment and the possible effects of the disease on fertility. During your pregnancy all healthcare NICE 2012. All rights reserved. Last updated May 2016 Page 3 of 11
professionals involved in your care should be fully informed about your Crohn's disease and your treatments. Discussing treatment options for active Crohn's disease When your Crohn's disease is active, drug treatment is usually used to manage the symptoms quickly and bring on remission, but sometimes surgery can be the best option. Before offering any treatment your healthcare team should discuss with you (and your family or carers if appropriate) the different options, the possible side effects, how often these might occur, and how your treatment will be monitored. They should also discuss the different treatment options among the healthcare team. Drug treatment for active Crohn's disease First treatment You should usually be offered a conventional steroid as a first treatment. This might be prednisolone, methylprednisolone or hydrocortisone. Steroids can be given in tablet form or as an injection. They are very effective at reducing inflammation but do have side effects. For this reason, your healthcare team should gradually reduce, or taper, your steroid dose when your symptoms have improved. If you can't or don't wish to take one of these conventional steroids you may be offered another steroid called budesonide or another type of drug called a 5-aminosalicylate (5-ASA). These drugs have fewer side effects than a conventional steroid but they are also less effective. A liquid diet (known as 'enteral nutrition') may be offered in place of a conventional steroid to bring on remission in: children when there is concern about growth or the side effects of drug treatment young people when there is concern about growth. The liquid diet contains all the nutrients needed. NICE 2012. All rights reserved. Last updated May 2016 Page 4 of 11
Additional treatment If you have two or more periods of active Crohn's disease in 12 months or your steroid dose cannot be reduced without your symptoms returning, you may be offered additional treatment with azathioprine or mercaptopurine. These drugs aren't suitable for everyone. You should have a specific blood test to see whether they are suitable for you before you are offered the treatment. If you cannot take azathioprine or mercaptopurine, you may be offered methotrexate instead. Azathioprine, mercaptopurine and methotrexate are immunosuppressive drugs which work by lowering the response of the body's immune system. Your healthcare team should discuss with you the possible side effects, how often these might occur and how the treatment will be monitored. Treatment with these immunosuppressive drugs needs regular monitoring, so you'll need to have regular blood tests to check for side effects. Treatments for severe Crohn's disease Sometimes Crohn's disease is severe and steroids and immunosuppressive drugs don't work very well. NICE has defined 'severe' Crohn's disease as when a person has very poor general health and one or more of the following symptoms: weight loss, fever, severe pain in the abdomen, frequent bouts (3 or more per day) of diarrhoea. People with severe Crohn's disease are likely to be offered infliximab or adalimumab, although surgery can be the best option in some cases. Infliximab and adalimumab can help reduce symptoms by stopping a substance in the body called 'TNF alpha' from working. TNF alpha is involved in causing inflammation in the gut, and people with Crohn's disease have too much of this in their body. Infliximab is an option for children and young people aged 6 and over, and for adults, but adalimumab is an option for adults only. If you are starting infliximab or adalimumab, your doctor should discuss with you the options of taking one of these drugs on its own, or taking it at the same time as an immunosuppressive drug. They should talk to you about how well the two options work and their long-term side effects. See other NICE guidance for more details on NICE's advice on infliximab and adalimumab. Off-label use In the UK, medicines are licensed to show that they work well enough and are safe enough to be used for specific conditions and groups of people. Some medicines can also be helpful for conditions or people they are not specifically for. This is called 'off-label' use. Off-label use might also mean the NICE 2012. All rights reserved. Last updated May 2016 Page 5 of 11
medicine is taken at a different dose or in a different way to the licence, such as using a cream or taking a tablet. At the time of publication, some of the drugs mentioned here may be recommended for 'off-label' use in this guideline. Your doctor should tell you this and explain what it means for you. There is more information about licensing medicines on NHS Choices. Surgery Discussing the option of surgery Surgery is sometimes needed for Crohn's disease. Before offering you any type of surgery your healthcare team (including a gastroenterologist and surgeon) should discuss the benefits and risks with you. Discussions should take account of your personal preferences and your lifestyle. NICE has only looked at some types of surgery.. The advice from NICE on these types of surgery is explained below.. You should ask your healthcare team for information about other types of surgery for Crohn's disease. Removing part of the distal ileum If your disease is confined to the last part of the small intestine (known as the distal ileum) you may be offered an operation to remove the affected part. This might be instead of drug treatment. This type of surgery may also be an option before or early in puberty when there is concern about a child's or young person's growth or their Crohn's disease has not responded to drug treatment. Treatment for intestinal narrowing (stricture) In some people narrowing (stricture) of the intestine is a complication of Crohn's disease. The stricture can usually be treated by an operation to remove or widen the narrowing. This may be done as keyhole surgery. Occasionally single, short strictures are managed by a procedure known as balloon dilation. A tube with a balloon attached is passed up the back passage and into the affected area. The balloon is then inflated to open up the stricture. NICE 2012. All rights reserved. Last updated May 2016 Page 6 of 11
Maintaining remission in Crohn's disease Options during remission When your symptoms have subsided and you are in remission, your healthcare team should discuss with you (and your family or carers if appropriate) possible options for managing your disease during remission. The choices should include continuing with drug treatment or having no treatment. The healthcare team should discuss with you the risk of having a relapse with or without treatment. They should also discuss the possible side effects of the different treatment options. They should make a note of your views in your patient record so that all healthcare professionals involved in your care are aware of them. Follow-up during remission for people who choose not to have drug treatment If you decide not to have drug treatment during remission, your healthcare team should discuss with you (and your family or carers if appropriate) plans for follow-up. These should include how often you should have an appointment and who you should see. They should make sure that you know which symptoms suggest a flare up and should prompt you to visit your healthcare professional. These include unintended weight loss, abdominal pain, diarrhoea and general ill health. You should know how you can get an appointment if you have a relapse. The healthcare team should discuss with you the importance of not smoking. Drug treatment during remission for people who have had drugs to induce remission If you choose to continue drug treatment during remission, you should be offered a single drug: azathioprine or mercaptopurine or methotrexate. The drug offered will depend on your condition and whether you've received the treatment in the past. You may be offered azathioprine or mercaptopurine if you were diagnosed with Crohn's disease at a young age, you were taking steroids when you first developed Crohn's disease, your disease is severe or the area around the back passage is affected (perianal disease). Conventional steroids and budesonide are not recommended as treatments for maintaining remission. NICE 2012. All rights reserved. Last updated May 2016 Page 7 of 11
Drug treatment during remission for people who have had surgery for active disease If you choose to have drug treatment to maintain remission after surgery, you may be offered azathioprine, mercaptopurine or 5-aminosalicylate (5-ASA). The drug offered will depend on whether you've had more than one operation for your disease and whether you've had certain complications. Monitoring If you're receiving treatment with an immunosuppressive drug (azathioprine, mercaptopurine or methotrexate) it is important you have regular blood tests to check for side effects. Long-term or repeated steroid use can cause bone thinning (osteopenia) or fragile bones (osteoporosis). NICE has produced separate advice on assessing the risk of bone fracture in osteoporosis. See other NICE guidance for details of our guidance on this topic. Children and young people with Crohn's disease who have risk factors for osteopenia (such as a low body weight for their height, continued or repeated steroid use or bones that have broken easily) may be offered regular tests to detect changes in bone mineral density. Some people with Crohn's disease have a small increase in risk of developing colorectal cancer. For this reason, adults with Crohn's colitis (involvement of the large bowel) should be offered regular check ups to look for colorectal cancer in line with NICE's advice (see other NICE guidance for details of this). Questions to ask about Crohn's disease These questions may help you discuss your condition or the treatments you have been offered with your healthcare team. About your condition Why do you think this is Crohn's disease? Which parts of my bowel are affected? How does that affect how the disease is treated? Will Crohn's disease affect my growth and development? NICE 2012. All rights reserved. Last updated May 2016 Page 8 of 11
Are there any reasons why you think I may have a more difficult time in the future? Are there any support organisations in my local area? Can you provide any information for my family/carers? Treatments Can you tell me why you have decided to offer me this particular type of treatment? What are the pros and cons of this treatment? What will it involve? How will it help me? What effect will it have on my symptoms and everyday life? What sort of improvements might I expect? How long will it take to have an effect? Are there any risks associated with this treatment? What are my options for taking treatments other than the one you have offered me? Is there some other information (like a leaflet, DVD or a website I can go to) about the treatment that I can have? No treatment What will happen if I choose not to have the treatment you have offered? Surgery Will I need to have an operation? How will I feel different after the operation? Will I have a big scar or will it be keyhole surgery? Will I need a stoma after the operation? NICE 2012. All rights reserved. Last updated May 2016 Page 9 of 11
Lifestyle Would it help my condition if I made some changes to my lifestyle, such as giving up smoking or changing my diet? Where can I get more information about diet and Crohn's disease? Will I be able to attend school or work full time? Side effects What should I do if I get a specific side effect? (For example, should I call my GP, or go to the emergency department at a hospital, or is there a contact number I should ring?) What monitoring is needed to look for side effects? Are there any long-term effects of taking this treatment? For family members, friends or carers What can I/we do to help and support the person with Crohn's disease? Is there any additional support that I/we as carer(s) might benefit from or be entitled to? Following up on your treatment When should I start to feel better and what should I do if I don't start to feel better by then? Are there different treatments that I could try? Does the length/dose of my current treatment need to be changed? Sources of advice and support Crohn's and Colitis UK, 0300 222 5700 www.crohnsandcolitis.org.uk CICRA children and young people with Crohn's and colitis, 020 8949 6209 www.cicra.org You can also go to NHS Choices for more information. NICE 2012. All rights reserved. Last updated May 2016 Page 10 of 11
NICE is not responsible for the quality or accuracy of any information or advice provided by these organisations. Other NICE guidance Patient experience in adult NHS services: improving the experience of care for people using adult NHS services (2012) NICE guideline CG138 Colonoscopic surveillance for preventing colorectal cancer in adults with ulcerative colitis, Crohn's disease or adenomas (2011) NICE guideline CG118 Infliximab and adalimumab for the treatment of Crohn's disease (2010) NICE technology appraisal guidance 187 Medicines adherence: involving patients in decisions about prescribed medicines and supporting adherence (2009) NICE guideline CG76 Varenicline for smoking cessation (2008) NICE technology appraisal guidance 123 Smoking cessation services (2007) NICE guideline PH10 Brief interventions for smoking cessation (2006) NICE guideline PH1 Assessment and treatment for people with fertility problems (2004) NICE guideline CG11 ISBN: 978-1-4731-1861-4 Accreditation NICE 2012. All rights reserved. Last updated May 2016 Page 11 of 11