Controlling your IBD
Managing life's ups and downs
Top tips
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It can take time to adjust to living with IBD
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IBD may be part of your life, but it should not define who you
are
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Living with IBD means balancing your disease with your life;
there will be times when your health has to be prioritised over
other activities
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It is important that you take responsibility for managing your
disease, so that you are in a stronger position to deal with the
other uncertainties that life brings to us all
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Learn to trust others and be clear about your needs and
priorities
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It can take time to identify the most appropriate medication for
you
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Remember to continue to take your medication during flares and
through remissions
Chronic illness has a huge effect on all aspects of life. As well as
having to deal with physical changes associated with the disease,
you will also need to manage the psychological changes that occur.
We are all different, and everyone has their own way of managing the
uncertainty that comes with change.
In
this section we will discuss the uncertainties that are associated
with the changes you are likely to experience due to IBD, as well as
changes due to life experiences.
Changes due to IBD
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Your disease will constantly change and progress. From diagnosis, to
the occurrence of disease remission and flares, through to changes
brought about by your medication, there are many different phases of
your IBD. Some of these phases will be easier to manage than others.
Diagnosis:
this is the first major change you will be confronted with. Your
first reaction may be one of shock, because you have an illness that
could affect you for the rest of your life. However, you may also be
relieved that the cause of the unpleasant symptoms you have been
experiencing has finally been identified and can now be treated.
Accepting the long term nature of the disease is often difficult -
but it is an important step. It is also important that you try to
lead as normal a life as possible and not allow the disease to
control you.
Flares:
IBD is characterised by intermittent periods of active disease
(flare/flare-up) followed by little or no disease activity
(remission). The duration and severity of the active periods vary
widely from person to person. The aim of treating IBD is to stop the
flare-ups, and ensure the disease is back under control, hopefully
into remission.
A
flare will probably not resolve by itself, and specific treatment
will be needed. Most people with IBD take a maintenance drug to help
keep their symptoms controlled, and so these maintenance drugs will
be continued during a flare-up. Other medications, diet
modification, or other supportive treatments may be prescribed to
bring the disease back under control.
The
time between flares may be anywhere from weeks to years, and varies
widely between patients - indeed, some individuals with IBD have
never experienced a flare-up. There are thought to be many causes of
flares, although there is not a great deal of clear evidence about
each. For most people with IBD, the only way to discover what has
caused their flare is through trial and error, such as by examining
their food intake and their general activities. However, some common
causes are recognised: foods (e.g. nuts, fruit and fried food can
exacerbate symptoms relating to strictures in people with Crohn's
disease); seasonal changes (particularly the spring and autumn) and
smoking (Crohn's disease). [NB. With ulcerative colitis, there is
some evidence that nicotine patches may suppress flares; however,
smoking is not recommended as the dangers associated with
smoking are far greater than any potential moderation of symptoms].
If
you experience a flare-up you should continue with your medication,
consult your healthcare practitioner, and follow whatever advice
they may give you - which will be dependent on your personal
circumstances.
Sometimes you may be doing all that has been asked of you, and you
have committed fully to managing your disease - yet despite this you
still get a flare. This is frustrating, upsetting and
wearisome...but is not your fault. Unfortunately, it is the nature
of IBD - flares come and go, sometimes with no obvious cause. There
are some things which you can control, and there are other things
you cannot. Do not worry about the things you cannot control but
accept them, and focus on what you can positively control. Remember,
you are not alone; persevere with your management strategies and do
not lose heart.
Remission is when your IBD becomes inactive for a period of time.
Patients and physicians have different views of the meaning of
'remission', in practical terms. Whereas 'clinical remission' (the
absence of rectal bleeding, and normal stool frequency) is what the
clinician will use in clinical practice, it is 'steroid-free
remission' that often matters more to patients.
It
is important that you still continue to take your medication during
periods of remission, even if the medication has side-effects. Some
medicines are designed to prevent the return of the inflammation,
and if you stop taking them, there may be an increased chance of a
relapse. It can be a problem remembering to take your medicine,
especially when you are feeling well, so try to make taking it a
part of your daily routine; for example at mealtimes or when
brushing your teeth. If you start to suffer from any side-effects,
talk to your healthcare practitioner, who can review or change your
medication accordingly.
Changes due to surgery:
sometimes surgery is the best way to treat severe IBD and can give
enormous relief to the person suffering from IBD. The type of
surgery largely depends on whether you have ulcerative colitis or
Crohn's disease, and which part of the body is affected, as well as
the severity of the disease. Surgery for ulcerative colitis usually
involves partial or total removal of the large bowel (and is
considered a cure for the disease), while a high proportion of
patients with Crohn's disease will experience long periods of
remission after surgery, depending on the location of the disease,
and hence the type of surgery required.
Each area of the
intestine has a specific function
in the absorption of nutrients. If parts of the intestine are
removed by surgery, then the absorption of some nutrients may be
reduced or prevented. How this will affect you personally, and what
life-style changes you may need to initiate and manage, will need to
be discussed with your healthcare practitioner. It is normal to feel
anxious about surgical procedures, and so it can also be very useful
to talk to others who have experienced surgery.
Surgical intervention is usually applicable only in cases of severe
disease, so these changes are unlikely to affect you in mild disease
Changes due to medication:
when you first start to receive medication for your IBD, it may take
a little while to find the optimum combination of medicines that
suit you. This is perfectly normal, so do not be concerned if you
find your medications are changed in this early period, until your
doctor identifies what works best for you.
Many of the medicines used to treat IBD can have side-effects which
may cause changes to your body. Such side-effects are very well
recognised, predictable and most are relatively minor. However, if
any begin to cause you concern, or reduce your quality of life, you
should discuss them with your healthcare practitioner.
If
you do experience any side-effects, and even if you do not, it is
important that you continue to take your medications. Do not
suddenly stop taking them (some drugs, such as steroids, require
that you reduce the dose gradually) or alter the dose yourself,
without consulting your doctor.
If
you are taking certain drugs, such as steroids and
immunosuppressants, you may be more vulnerable to developing
infections. While it may be difficult, try to avoid people with
coughs, colds, 'flu etc. Many healthcare professionals strongly
recommend that individuals with IBD have an annual influenza ('flu)
vaccine and update vaccines before starting immunosuppressants as a
precaution (although
immunisation guidelines
for people with IBD do not differ from the general population, with
the exception of live agent vaccines). For women on
immunosuppressants regular cervical screening is recommended, and if
considering starting a family, any medication should be discussed
with your healthcare physician.
Changes in everyday life
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Everyday life is all about transition. There are times in our lives
when things are relatively stable, such as when we are living at
home with our parents. Then, our life becomes more uncertain when we
leave home, move in with friends or partners, or maybe even
relocate. There are also times when we are developing stronger
connections with others, such as when we find a partner, get
married, and have children. As we get older we become more focused
upon work and providing for the family, until such time as we can
look forward to our retirement. So, life goes through different
stages, and each of these can present us with challenges as well as
rewards.
Having to manage IBD on top of these life challenges can be
particularly stressful, especially when your disease is not stable.
It can feel like you are living your life under a shadow; however,
there are certain strategies you can employ to help.
Prioritising your health:
there will be times when your health will have to take priority over
other things such as hobbies, holidays, your social life or work. It
can be frustrating when this happens, as it may be difficult to make
long-term plans. However, things do change - difficult experiences
do pass. Sometimes you will need to prioritise your health; at other
times you will prioritise other important things in your life.
Reducing the feeling of isolation:
you may be the only person in your family or social circle with IBD,
and if this is the case it can feel very isolating. But remember
that everyone experiences bowel problems at some point. Others may
not understand what it is like to live with IBD, 24 hours a day, but
they will appreciate some of the symptoms you experience. Making
contact with others with IBD who understand what it is like (as they
live with IBD too) can be a very positive experience. It is often
reassuring to know that there are others who have the same condition
as you.
Developing trust in others:
many people with IBD are used to managing things on their own, or
feel 'safe' only with family members or close friends. Not everyone
needs to know about your IBD. However, there are times when it might
be helpful to share information about your disease. Sharing this
knowledge can reduce that worry about others finding out. If you are
in work, it can also make it easier if your employer knows, so that
if you need to take "time out" they are aware of the underlying
reasons. You will find that most people, particularly those closest
to you, are understanding and want to help out in any way they can.
Sometimes people do not know what they can do to help, so it can be
useful if you are clear about what you need.
Self management
is a term used to describe how people take responsibility for their
own health. Those who feel responsible for managing their health
often cope better than those who leave the responsibility completely
to their health professionals. You can learn to manage your own
disease by:
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