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Life, interrupted
The reality is that Crohn's or Colitis can interrupt your whole life. You never know when the next flare up will come. You can be getting ready for a big night out, and next minute, running to the toilet in agony.
Fatigue can feel like an invisible weight crushing you, leaving you completely drained. You want to be out working, studying or seeing your mates – but you feel like you’re running on empty.
You're not alone
Around 7 in 10 people with Crohn’s or Colitis have fatigue during a flare-up and adapting to unpredictability becomes a part of daily life.
Fatigue might not affect every part of your life - you may find that you can still do some things, but other things are harder.
There are many different things you and your healthcare team can try to help take control of your fatigue and limit its impact on your life.
One of the hardest things about Crohn’s and Colitis is how unpredictable they are. The conditions can be under control one minute, then flaring up the next. They affect every part of your life. Having Crohn’s or Colitis turns your life upside down. You just don’t know what’s coming next.
At Crohn’s & Colitis UK, we are making it our mission to fully understand your experience so we can fight for everyone affected by Crohn's and Colitis.
We are always listening to the voices of people like Lauren, Adam, and many others, hearing how their entire lives have had to adapt and how they have had to build a life around their condition.
At Crohn’s & Colitis UK, we are making it our mission to fully understand your experience so we can fight for everyone affected by Crohn's and Colitis.
We are always listening to the voices of people like Lauren, Adam, and many others, hearing how their entire lives have had to adapt and how they have had to build a life around their condition.
"My whole world has had to adapt and I've had to form a life around my condition.
My work has had to adapt, what I do socially has had to adapt, it affects how much I do physically, and I have had to learn to really listen to my body."
"You essentially feel empty, and void of any drive or energy.
Even the most simple thing like standing up is like climbing Everest. Getting dressed is incredibly difficult."
Another interruption...
We hear from thousands of people every day so we know we can tell powerful stories about your lives and what needs to change, backed by facts and statistics. But we also know that we are not reaching every part of our community and so cannot reflect the full range of experiences.
Please share your experiences and story with us. Every submission will support us on our mission to fully understand your experience so we can fight for everyone affected by Crohn's and Colitis. Because whoever you are, a diagnosis of Crohn’s or Colitis can be life changing.
It can be very rewarding, but sometimes it can also be tough or emotional to share your story and experiences. If you are in need of help and information, please visit our helpline pages for details of how to contact our helpline and other organisations which offer support.
Personalised care and support helps you take control of how you manage fatigue and flare-ups. Interruptions and delays in accessing this can intensify symptoms and put your health at risk.
That's why we're calling on the new UK Government to cut the wait for people living with IBD across diagnosis, treatment, and care.
Show your support by adding your name to our open letter.
How much is fatigue affecting your life?
Our fatigue scale enables you to self-assess the severity, frequency and duration of fatigue and the impact it has on your life.
The scale enables people living with IBD to raise their fatigue symptoms with healthcare professionals, assess whether lifestyle changes are having any impact and discuss their fatigue more easily.
Need support exploring different medicine options that are suited to your personal needs and preferences?
Our Medicine Tool is designed to help you understand the differences between types of medicines, explore different treatment options and feel empowered to discuss medicine options with your IBD team.
Helpline Service
We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.
Our helpline team can help by:
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Providing information about Crohn’s and Colitis.
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Listening and talking through your situation.
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Helping you to find support from others in the Crohn’s and Colitis community.
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Providing details of other specialist organisations.
Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.
Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).
If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.