How can I cope with ulcerative colitis?
‘There will be good days, and there will be bad days. You can let yourself do less on the bad days, because you know there will be a good day again soon.’ – A.G., Greece
Having ulcerative colitis can sometimes affect nearly every aspect of your life beyond just the physical symptoms. Depending upon your age and your point in life, you may worry about the financial burden of your illness, possible loss of work or income, or implications for insurance coverage. As an older adult, you may face challenges around work or retirement, caring for family members, or leisure time activities. There is also the social impact – coping with issues associated with being chronically ill as well as any practical challenges of going out in public and needing access to toilets. On a personal level, relationships with your spouse, your children, your parents and your friends are important to discuss in the context of IBD.
You may also have a range of emotional reactions to your diagnosis, such as fear, denial, relief, guilt, anger or resentment. All of these reactions are normal and usually in time, as you learn to cope with your illness, you will reach a level of understanding and acceptance. It is helpful to be able to talk through your feelings with someone else, such as a friend or close family member or loved one. Also consider speaking with your doctor about psychological counselling if you find you need emotional support.
‘If your friend asks how you are doing, my advice is to tell them how you really feel. You will find them to be more supportive when they know what’s going on inside. ’ – C.B., The Netherlands
Patient support groups are also very helpful in providing emotional support as well as information about specific problems or issues you are facing, at any age. To reach a support group in your area, get in touch with EFCCA or visit their website http://www.efcca.org.
There are several practical things you can do on a daily basis to help you cope. For example, if attacks of diarrhoea, pain or gas make being in public places difficult, some practical advance planning may help. Find out where the restrooms are in restaurants, shopping areas, theatres and on public transportation ahead of time. You may find it helps to carry along extra underclothing or toilet paper for particularly long trips. When going farther away from home, be sure to pack a large enough supply of your medication, find out its generic (non-branded) name in case you run out or lose it, and the location of clinics and hospitals in the area you may be visiting. It is also a good idea to check with your doctor to make sure you are well before you go.
Remember that many other people with ulcerative colitis face challenges similar to these every day, and that you’re not alone. Friends, loved ones and colleagues can all provide support for you, as well as support groups, who you can contact through EFCCA.
As you go about your daily life, try to stay involved in some of the same activities that you enjoyed before your diagnosis. Some days, you may not feel up to it. Other days, you may be able to achieve it easily, and you will want to give it more emphasis. Only you can decide what’s right for you. It will help to follow your doctor’s instructions and stay positive, and to play an active role in your care.
When telling others about your illness, it may be helpful to give them information or a list of resources where they can turn for answers to their questions. You can decide how much information you’d like to give someone else about IBD, and your illness. Some people may be curious and can deal with lots of detailed information in order to support you. For others, just some simple facts and practical points might be better.
For further practical advice, see Achieving more with IBD.
Another important thing you can do is learn all you can about your illness and be involved in your care. Working with your doctor to make decisions and address your concerns will give you back a feeling of control. It is most helpful if you talk openly and honestly about any concerns you may have, and ask questions along the way if there is something you don’t understand or if an answer is unclear. For more information about working with your healthcare team in the management of your disease, see, Your IBD Consultation.
Here are some things you can do to play an active role in the management of your illness:
- Be involved in the proactive management of your own health every day
- Know when and how to take care of your general health
- Follow your management plan and take your medication
- Ask questions if you are concerned, and seek help if a problem arises