Inflammatory Bowel Disease (IBD), which includes Crohn’s Disease and Ulcerative Colitis (UC), is a very individual condition. The symptoms vary widely and while some people go into remission and remain well for a long time, perhaps years, others have frequent flare-ups. Living with a long term illness like IBD can affect you both physically and emotionally. Here we look at how to stay well for longer - concentrating on feelings.
Coming to terms with having IBD
It can be a shock to hear that you have a chronic (long term) illness, especially when no-one can tell you with certainty what caused it or how it will develop. Not knowing what to expect can leave you feeling helpless and uncertain. You may also feel quite angry and upset, particularly when first diagnosed.
Some people initially respond by feeling completely overwhelmed, or may go into denial. While no-one can pretend it is easy coming to terms with an illness like IBD, it can be helpful to try and accept that you have a medical condition and that you may need to make adjustments in your life. For example, there may be times such as during a flare-up, when you need to rest and recuperate. At other times you may be able to take on new projects and live life to the full. Despite the impact that IBD can have on everyday living, many people with the illness lead very active lives, do well in their studies and are able to work full-time.
Understanding your IBD
Many people with IBD find that the more they learn more about their condition and how to manage it, the more they feel in control of their lives. However, everyone is different and how much information you wish to have is entirely up to you.
At Crohn's and Colitis UK we produce a range of information sheets and booklets about all aspects of IBD, which you may find useful. All our publications are available from our office and can also be downloaded from our website. We also have an information service for any IBD related queries.
Stress, rest and relaxation
Stress is a part of life and no-one can avoid it completely. All sorts of life events such as getting married or divorced, bereavement, work problems, moving house, even just going to family gatherings, can raise stress levels. A certain amount of stress can be stimulating, but too much can affect well-being.
While stress is not a cause of IBD, there is evidence that too much may lead to a flare-up. So, it makes sense to try and reduce stress where you can. Becoming aware of what is causing you stress is often the first step in tackling it. You may be able to avoid some stressful situations or, if not, plan ahead how you will deal with them. Other ideas for reducing stress are shown below:
- Be realistic about what you can achieve. Don’t take on too much and don’t feel guilty about saying ‘no’.
- Make time for relaxation or leisure each day. You could try deep breathing and deep muscle relaxation exercises, or aromatherapy, reflexology or yoga. Just sitting quietly and listening to music or reading a book can also be very relaxing.
- Take time to eat your meals. Sit down and eat slowly, allowing at least half an hour for each meal.
- Exercise regularly.
- If you can, take regular holidays. Just a change of surroundings over a long weekend can be as good as a longer break.
- Try talking things over with someone you can trust and share your feelings with. Writing down your feelings in a journal or blog, or visiting a web forum might also help.
If you feel stress is getting on top of you talk to your doctor or nurse about it. You might also find it helpful to see a counsellor. Your GP may have a counselling service or you can find a counsellor through the British Association for Counselling and Psychotherapy. See our leaflet, Counselling for IBD.
Being positive
Managing your condition in the ways suggested here is likely to make you feel more positive. There will probably still be days when you feel down and that life is unfair. You may have flare-ups that are very difficult to deal with. But, don’t lose sight of your achievements and the times you have coped successfully with the problems of IBD. Without expecting too much from yourself, you should find that the more you look after yourself, the more you will be able to enjoy your life.
Getting support
Having support is important for everyone and especially so if you are living with a long-term illness. It can make all the difference in coping with illness and to your quality of life. Living with an ongoing condition can put a strain on relationships with partners, family and friends. You may sometimes feel that no-one around you understands what it is like having to live with IBD. Those close to you are more than likely to want to help you, but they may not know how. Being open with them and sharing your feelings and concerns, usually helps. You could also show them some of our leaflets and booklets such as Living with IBD.
You may find it useful to join a local IBD group for support. We have over 70 Crohn’s and Colitis UK Groups spread across the UK. You can find out where your nearest Group is from our office or on our website. If it is difficult for you to attend meetings, you could be in touch with others with IBD through web forums and discussion boards.
There may be times when you feel isolated, upset, or would just like to talk about having IBD. We also provide a supportive confidential listening service called Crohn’s and Colitis Support (0845 130 3344).
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