Controlling your IBD
Living with IBD can be a challenge, but one which, with support, can
be met. You may experience pain, unpleasant and stressful symptoms
(such as an urgent need to go to the toilet), and/or incontinence,
as well as fatigue. You will also have to pay attention to your diet
and nutrition. However, it is important to realise that you are not
alone; there are many, many people who have learned to manage their
IBD on a daily basis.
This part of the website will provide you with useful strategies and
solutions to enable you to face the future with optimism, to empower
you to lead as normal a life as possible, and help you manage your
IBD day by day.
Urgency and Incontinence
Incontinence can appear in patients with severe IBD or after certain
surgical procedures, and it can be socially isolating; however,
there are strategies you can employ, and people who can help you, in
order to manage the condition.
Build up your confidence before travelling by:
doing research to locate toilets and plan ahead
using your IBD organisation for help and advice
use 'Can't wait Cards'
keeping a change pack with you for emergencies
Be sure to check with your healthcare practitioner before taking any
Discuss the possible causes of your urgency or incontinence with
your healthcare practitioner; keeping a record of events that you
can discuss with your physician may help. The date, nature and
severity of event, potential triggers and treatment action taken
could be written in the record of events. If desired, a typical
record sheet can be downloaded from
What is faecal incontinence and faecal urgency?
Faecal incontinence is the inability to control the passage of wind
or stools (faeces) through the anus and can have a devastating
effect on quality of life and psychological well-being. For some
people faecal incontinence is limited to a slight occasional soiling
of underwear, but for others, it can involve a considerable loss of
Faecal urgency is the inability to wait or 'hang on' to go to the
toilet to use the bowels. A sufferer has to get to the toilet as
soon as they feel an urge to go. Accidents may not always happen,
but faecal urgency is disabling.
Both conditions can occur in IBD and will most probably require
personal management strategies, together with a wider support
network (for example, from your partner and family). Help, support
and advice are also available from your healthcare practitioner, and
from your local IBD organisation.
What can I do about my incontinence?
back to top
First of all, you are not alone; incontinence is experienced by more
people than you think. However, if you do suffer from the condition
in any way, you will probably realise that it can have important
psychological implications. From the time we are toilet trained, we
are expected to be able to handle going to the toilet. The following
advice should help you to manage incontinence.
although it is an embarrassing topic, it is important to learn to
accept your incontinence - it is not your fault, it is a consequence
of your disease. Try to discuss this with your healthcare
professional, within your support group and/or with your family.
Incontinence can be socially isolating as well as debilitating, so
having a support network of people who know you, and understand the
problems you face, is very important.
Try to identify a cause:
you should also discuss the possible causes of your incontinence and
urgency with your healthcare practitioner, as there may be treatment
available depending on your personal circumstances. For example, is
your problem caused by active disease? Is it a muscle tone or
transit issue? Could it be due to pouchitis (Ileo-anal pouches are
constructed for people who have had their large intestine surgically
removed due to disease or injury; pouchitis is inflammation of this
ileal pouch)? Or is it a consequence of an active infection
(particularly if the incontinence is new and of sudden onset)?
Finally, IBD can sometimes cause scarring that makes the walls of
the rectum less elastic. Because the rectum can no longer stretch as
much to hold stools, faecal incontinence results. IBD can also
irritate rectal walls, making them unable to contain stools.
on the practical side, it is very important that you do not feel
house-bound because of faecal incontinence and urgency. It can be
embarrassing and isolating, but if you plan your day or your journey
(making this part of a personal daily routine), this will empower
you. Give yourself confidence, and a feeling of control, by doing
research and planning ahead before visiting new places. Try and find
out the location of toilets beforehand. Contact your national IBD
organisation for help. Each country has its own support schemes e.g.
RADAR keys in the UK which allow people with IBD to use disabled
facilities, TTT (Toilet Tom Tom) in Denmark. 'Can't Wait Cards' are
also available in most countries: check the information about these
EFFCA web-site. Smart phones which allow internet
access can also help when on the move.
Carry a change pack:
if you are experiencing urgency and incontinence it can be helpful
to carry around some or all of the following: wet wipes, toilet
paper, change of underwear, panty pads/liners, air freshener,
disposable bags and tissues.