“…Crohn’s Disease? …Oh that’s like Irritable Bowel Syndrome right?…”
Not quite. Crohn’s Disease and Ulcerative Colitis are two forms of Inflammatory Bowel Disease affecting over 300,000 people in the UK. They are chronic conditions which mean that they are ongoing and life-long, causing a range of symptoms including extreme pain, fistulas, fatigue, diarrhoea, anaemia, depression, osteoporosis, severe weight loss, joint pain and mouth ulcers and treatment can include dietary changes, medication and surgery.
It’s important to understand that Crohn’s Disease and Ulcerative Colitis are ‘invisible illnesses’ and in many cases, people are having to carefully monitor the side effects of the medication they are taking as well as monitoring their diet.
The medicines themselves used to treat the conditions can cause unfortunate side effects ranging from hair loss, a low immune system making you more susceptible to infection to foetal abnormalities so it is absolutely imperative that we raise as much awareness as possible, to encourage fundraising which can then be used for research to find a much needed cure.
According to the UK’s leading charity for Inflammatory Bowel Disease, Crohn’s and Colitis UK, someone new is diagnosed with Crohn’s or Colitis every 30 minutes and 1 in 4 people newly diagnosed are under 16.
Many people who live with Inflammatory Bowel Diseases don’t like to talk openly about it. they may feel embarrassed, as I did myself for many years, because talking about our bowels has not been culturally considered to be the most glamorous of topics. During emotionally draining moments, we may retreat or hide things from the people we love as we don’t want them to worry which can ultimately lead to a lonely and isolating existence.
Strength in numbers…
I firmly believe that by talking openly about the symptoms and treatment for Crohn’s Disease and Ulcerative Colitis, we can overcome this embarrassment and together we can make the invisible visible. There are many inspirational groups on social media platforms positively raising the profile of the conditions and celebrating people’s bravery and courage, ‘Get Your Belly Out’ being one of the most inspirational.
A positive step that Crohn’s and Colitis UK have made in making the invisible visible, is influencing four of the major supermarket chains to adopt the invisible disability toilet signs in their shops, which means that people with Inflammatory Bowel Disease no longer have to worry about finding an available toilet, being able to use the disabled toilet without fear of being refused access or confronted about why they are using a disabled facility, simply because that person might ‘look okay’ on the outside. This is something I myself have encountered numerous times.
On becoming a member of the charity ‘Crohn’s and Colitis UK’, you receive a wallet sized card known as the ‘URGENT Can’t Wait’ card which you carry in anticipation of being caught out and needing a toilet whilst in a public place which provides an enormous amount of reassurance.
Luckily in 12 years I have never had to use my card, and I’m hoping that with the new signs on public toilets being on the rise, I won’t have to. The charity currently have a ‘Travel with IBD’ campaign aiming for widespread adoption of accessible toilet signage in airports, railway stations and service stations, highlighting that not every disability is visible.
This simple but effective act, will help to ensure people with a hidden disability can use toilet facilities without fear of criticism or embarrassment. Please click on the link below to show your support and help make the invisible visible, thanks for your support.