Having Crohn's disease 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.
'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
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 are having difficulty coping.
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.
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 Crohn's disease 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 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.
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
