According to latest figures, 300,000 people in the UK have Crohn’s disease or ulcerative colitis, the two main forms of inflammatory bowel disease (IBD) - with someone from the UK being diagnosed every 30 minutes.
To mark World IBD Day on May 19, Crohn’s & Colitis UK spoke to the IBD community to hear more about their experiences and to highlight the common misconceptions surrounding the illness, things people have said to them about their illness and the truth.
Don’t say: Have you tried cutting out gluten? I’ve heard that really helps
The facts: It’s a common misconception that IBD is caused by a poor diet and poor food choices, however it’s not true.
A spokesperson from Crohn’s & Colitis UK explained: “Although certain foods may exacerbate symptoms, contributing to a flare-up, a poor diet does not lead to or trigger the disease. Furthermore, IBD is certainly not the same as being gluten intolerant and should not be confused with coeliac disease.
“The condition is also very variable depending on the individual. Although some of the IBD community members find they are sensitive to certain foods, particularly wheat, caffeine and diary, whilst cutting out certain foods and food groups might aid one individual’s symptoms, it may not be the same for another.”
Don’t say: It’s just a stomach ache
The facts: “There is still a lack of awareness around the progression of the conditions, with some people assuming IBD will go away in time,” said the spokesperson.
“However, the sad reality is that there still isn’t a cure for this disease. IBD is a chronic condition, and although it can be well managed and kept under control using medication and sometimes surgery, it is still a lifelong condition.”
Recent stats estimate that 80% of those with Crohn’s Disease and 25% of those with ulcerative colitis will need surgery.
Don’t say: You don’t look very ill
The facts: One characteristic of IBD is that even when an individual is in chronic pain, the symptoms are usually invisible to the naked eye.
The spokesperson said: “Some people with the condition have said ‘Although I look well on the outside, if you turned me inside out I certainly wouldn’t’. In some cases, even individuals own close friends and family can make hurtful comments or question how the individual is feeling purely based on their appearance and how well they look.”
Don’t say: Stop using your illness as an excuse
The facts: “Those living with IBD will often experience extreme pain and fatigue which can be exhausting for the individual on a day to day basis,” the spokesperson said.
“This can mean periods where they are unable to work due to symptoms and/or regular hospital appointments. There is a great lack of understanding in terms of how the disease affects people’s day to day lives and this lack of understanding can also lead to feelings of isolation, embarrassment and loneliness amongst people with IBD.”
Don’t say: But you’re too fat to have Crohn’s
The facts: Another key misconception is that IBD always causes extreme weight loss leading the public to believe that surely you must be skinny if you have IBD?
“Like all diseases and conditions, they affect people in different ways. Yes, some may have instances of being underweight and malnourished and in some cases, nausea and sickness can lead to a loss of appetite. However, this is certainly not the case across the board and steroid medication and periods when those with the conditions are unable to exercise as a result, can in fact cause weight gain.”
Don’t say: I wish I had Crohn’s so that they could lose weight like you
The facts: “Perhaps one of the most hurtful and ignorant comments which those with IBD face is that they wished they had the condition too ‘to shed a few extra pounds’,” said the Crohn’s and Colitis UK spokesperson.
“For those who have IBD this could not be more insensitive. Extreme weight-loss often comes with extreme pain, fatigue and feelings of depression, making even the simplest of everyday activities exhausting.”
Don’t say: Can’t you just hold it in?
The facts: One of the most debilitating symptoms of IBD is the sudden and unexpected need to use the toilet – which can lead to discriminating comments, even in the workplace.
“The community have also found problems arise when using the disabled toilet in public places; with tuts and glares from those questioning why someone who doesn’t look physically disabled, is using the disabled facilities,” they said.
So much so, in fact, that Crohn’s and Colitis UK has been campaigning for better signage on accessible toilet doors in UK supermarkets.
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