Helpline
Need to talk, need support? What is our helpline for?
Every year, on 19 May we mark World IBD Day. It’s a chance to really put Inflammatory Bowel Disease on the map and get people thinking about what life with Crohn’s or Colitis is really like.
There are more than 500,000 people in the UK living with Crohn’s or Colitis. That's 25,000 people a year who are given the life changing diagnosis of Inflammatory Bowel Disease.
It’s a sizeable chunk of the population, but despite this, there are often myths and misconceptions surrounding these conditions, which feed stigmas, hinder understanding, and undermine the severity of symptoms experienced by those living with Crohn's or Colitis.
This World IBD Day, we’re highlighting some of the most popular misconceptions people have about Crohn’s and Colitis and setting the record straight.
FACT: Crohn’s and Colitis involves chronic inflammation of the gut, which can lead to damage and ulcers. When your gut doesn’t work properly, the effects can be devastating. Crohn’s and Colitis can disrupt every part of your life - from digestion and joints to your energy levels and mental health.
There can also be severe complications such as strictures (narrowing of the intestines), fistulas (abnormal connections between different parts of the intestines or between the intestines and other organs) and abscesses – all of which are incredibly painful. Often people living with Crohn’s or Colitis describe the intense pain as ‘someone tying their innards in a knot’.
People living with Crohn’s and Colitis face a lifetime of strong medications and, in some cases, surgery to manage complications or improve quality of life. If left untreated, these conditions can be life threatening.
No two people living with the condition are the same, everyone’s symptoms are as unique as their fingerprint. Not only that, symptoms may change over time. There really is no one-size-fits-all when it comes to Inflammatory Bowel Disease.
Unsure what Crohn’s Disease or Ulcerative Colitis are? Or want more information on how you can confidently manage your condition to live a freer, fuller life? We can help.
Found yourself relating to the people in the video above? If you're having gut symptoms that are impacting your day-to-day life, try our symptom checker. In less than 30 seconds it can help you decide if you should speak to your GP.
FACT: Fatigue and tiredness are in entirely different leagues. Fatigue is ongoing tiredness, a lack of energy or exhaustion that doesn’t improve even after rest or sleep. It’s a real symptom that can be very hard to live with. Fatigue can be both physical and mental.
Fatigue can impact your life in every way, such as your performance in school or at work, your relationships, your ability to do everyday tasks and your social life. Because of this, many people with Crohn’s or Colitis say fatigue is the most difficult symptom to deal with.
FACT: Crohn’s and Colitis are invisible illnesses. They often cause symptoms that other people won’t see, such as severe pain, diarrhoea, blood in poo or extreme tiredness. Living with Crohn’s or Colitis can be hard, but this may not be noticeable to other people
Not everyone’s symptoms are the same. Although Crohn’s and Colitis are types of Inflammatory Bowel Disease, they can cause symptoms in other parts of the body. This might include joint pain, skin problems, eye issues or mouth ulcers. Nearly half of people with Crohn’s or Colitis experience these symptoms.
There may be times when symptoms are better and other times when they’re worse, known as flare-ups. Having a flare-up can be a difficult time and have a big impact on a person's life. It can be hard to cope with the symptoms, but what’s often overlooked is the impact the conditions can have on a person’s mental health. People living with Crohn’s or Colitis may be twice as likely to experience mental health problems, like anxiety and depression.
With Crohn’s and Colitis, you may not be able to see the physical symptoms, but that doesn’t mean there’s nothing going on. One of the hardest things to cope with is the unpredictability because it touches every part of your life socialising, work, studying and relationships.
FACT: Crohn's and Colitis are lifelong conditions for which there is no cure. There is a range of treatments including medicines and surgery that can help you feel better.
If you have Crohn’s or Colitis, what you eat may affect your symptoms. But it is different for everybody. There’s no one-size-fits-all advice on diet. There is no evidence that following a particular diet can cure Crohn’s or Colitis. You may come across diets that claim to do this, but there is no proof that these work. Eating a healthy, balanced diet is the best way to get all the nutrients that are important to help you stay well. Some people with Crohn’s or Colitis try alternative or complementary remedies, but again there is not enough evidence to recommend them as treatments for Crohn’s or Colitis.
Take a moment to watch this video featuring Zosia, who was diagnosed with Ulcerative Colitis at the age of 14. Zosia shares her experiences navigating school and university while managing her condition, highlighting the challenges she faced due to misconceptions. She recalls feeling particularly hurt by comments like 'Oh, but you don't look ill,' which left her feeling invalidated and dismissed.
Our online toolkit has been created so you can support World IBD Day in whatever capacity suits you.
Why not share some of our social graphics to show your support and raise awareness of the conditions? Or use our poster templates to get your organisation involved in fundraising for World IBD Day.
Help us continue to support everyone affected by Crohn's and Colitis.
Get all the tools and resources you'll need to host your own event this World IBD Day sent straight to your front door. Receive posters to raise awareness in your school, university or work place, banners, collection tins, pin badges and much more!
Email fundraising@crohnsandcolitis.org.uk to request your pack today
Join us this World IBD Day at one of our two virtual social events (at 10:30 - 12pm and 6:30 - 8pm).
These free events are a chance to chat, share experiences and learn from others.
Show your support for people living with Crohn’s or Colitis this World IBD Day by signing up to My WALK IT. Lace up your shoes and challenge yourself to a 5km, 10km, half marathon, or marathon walk throughout June.
Your support is crucial in debunking misconceptions about Crohn’s and Colitis. By donating, you enable us to provide accurate, expert health information to counter these myths to educate and empower others.
We know it can be difficult to live with Crohn's or Colitis, especially when you're faced with people misunderstanding what impact these conditions can have on your life. But you’re not alone. Our helpline can provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.
Our helpline is available 9am - 5pm, Monday - Friday on 0300 222 5700 or via LiveChat on our website.
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:
Providing information about Crohn’s and Colitis.
Listening and talking through your situation.
Helping you to find support from others in the Crohn’s and Colitis community.
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.
Would you like to save the changes made to this page?
Your details were successfully saved.
