Newly diagnosed with Crohn’s disease?
If you’ve recently been diagnosed with CD, one of the most important things you can do is to really get to understand your condition. Not only will this help you feel less fearful and more in control of your symptoms, but it’s also been shown that patients who have the knowledge, skills and confidence to manage their own condition (or are ‘activated’ – see below) enjoy better health and lower rates of hospitalisation.1
According to the World Health Organization, what people do in their everyday lives – the type of food they eat, how much they exercise and how far they follow medical advice – largely determines their health and their need for health care.1 And a recent study carried out by the King’s Fund found that “individuals with long-term conditions who are more highly activated are more likely to engage in positive health behaviours and to manage their health conditions more effectively.”1
Knowing about your condition, how to manage it, and what to watch out for, means you’ll be better placed to understand and discuss your symptoms and treatment options with your medical team.
What to watch out for if you have CD
People with CD may experience health ‘complications’. These may be outside the gut (also known as systemic or extra-intestinal problems) affecting the eyes, skin and joints, as well as inside it. Complications inside the gut (e.g. abscesses, blockages, the development of scar tissue, cuts and tears in the anal canal, and fistulas or tunnels) are found in around 1 in every 3 people at the time they are diagnosed, and in around 50% of patients within 20 years of diagnosis.2 In some cases, surgery may be required to remove part of the damaged gut
You may be the first person in your family to have inflammatory bowel disease (IBD). However, children of people with IBD have a greater than average risk of developing it, and the chances of passing IBD to your children are higher if you have Crohn’s disease than if you have ulcerative colitis. The risk is higher again if both parents have IBD.2 So, if you are thinking about having children, you may want to talk about these risks with your doctor
People with CD have a slightly higher risk of developing colorectal (or bowel) cancer than the rest of the population. The more severe your CD is, and the longer you have it, the greater the risk. You may be advised to have regular check-ups to monitor your condition.3 However, if you are worried about your health at any time you should see your doctor
People with IBD are slightly more at risk than other people of having a blood clot – either deep vein thrombosis (DVT- a blood clot that forms in a vein deep in the body) or pulmonary embolism (a blood clot causing a sudden blockage in a lung artery)
People with IBD are also slightly more at risk than other people of having primary sclerosing cholangitis (PSC), a form of severe inflammation and scarring in the bile ducts. It’s estimated that 1% of patients with Crohn’s disease will develop this condition.2 Symptoms include: jaundice, nausea, weight loss, and itching. There is no effective medication for PSC – a liver transplant may be needed
If you’re worried about any of your symptoms, discuss them with your healthcare team – that’s what they’re there for, and they’ll be only to happy to offer help, advice, and reassurance
As well as staying well informed about your CD, it may also help to:
Design a self-management plan
Having a self-management plan can help you manage your condition and feel more in control. You may choose to keep all your information together so you can develop your plan as your treatment progresses.
Having a self-management plan can help you to:
- Identify your particular healthcare needs. For example, this might include ways to manage stress/anxiety. Researchers have found a link between flare-ups and stress, with stress making IBD symptoms worse.4 So finding ways to manage stress can not only help you feel better, it may also reduce the risk of a flare-up
- Set personal goals and action plans (i.e. the steps you need to take to achieve these goals)
- Recognise any barriers to achieving these goals, and how to overcome them
- Identify the support you’ll need from family, friends and healthcare professionals
- Keep your healthcare records in one place and monitor your own condition. You can make notes about any new symptoms, treatments/ medications; appointments with your healthcare professionals, questions you want to ask them, and any advice they offer
- Ensure everyone involved in your care knows which inflammatory bowel disease (IBD) services are provided by your own doctor/GP; which services are provided as an outpatient at hospital; and those offered by a dietitian. In other words, the plan can help coordinate your care
- Help you think about, and then commit to, feeling more in control of your UC
Ask your doctor or IBD nurse if they can help you with this plan – it can sit alongside your treatment plan.
Build a support network and talk about your condition
It’s good to talk. Talking to your friends and family about your CD can help them understand more about how you’re feeling and recognise how they can help you.
Your own doctor and inflammatory bowel disease team – including the specialist nurses – are key people in your network so working with them to make decisions about your care is important. You are likely to get to know some of them very well. Keeping your appointments, feeling involved in decisions about your CD, and being open and honest with them about how you’re feeling will help them to help you.
There are also many online IBD communities. However, bear in mind when visiting chat rooms and forums that people experience IBD in different ways so if you read something that worries you, your own experience may be very different and less traumatic. Always ask your own healthcare team for advice if you’re concerned.
Your doctor or IBD nurse specialist may be able to help you find local patient organisations and groups where you can meet others who have CD, as well as accessing counselling and trusted online sources of information and support. Some patient organisations also offer a confidential listening service and access to trained counsellors.
1: Kings Fund. Supporting People to manage their health. Available at: https://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file.... Accessed 22 November 2016.
2: Crohn’s & Colitis Foundation of America. Facts about Inflammatory Bowel Diseases. Available at: http://www.ccfa.org/resources/facts-about-inflammatory.html. Accessed 24 November 2016
3: Bowel Cancer Australia. Inflammatory Bowel Disease. Available at: https://www.bowelcanceraustralia.org/bowel-diseases. Accessed 24 November 2016.
4: Mawdsley J and Rampton D. Psychological stress in IBD: new insights into pathogenic and therapeutic implications. Gut. 2005 Oct; 54(10): 1481–1491.doi: 10.1136/gut.2005.064261. Available online at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774724/. Accessed 24 November 2016.