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Living with Crohn’s & Colitis – The Urgent Issues Facing IBD Care
Written by
Sam Cleasby
Published on
December 4, 2024
This week is Crohn’s and Colitis Awareness Week and charity Crohn’s and Colitis UK have launched a campaign called Face the Facts. They say:
“Crohn’s and Colitis affect over 500,000 people in the UK, significantly impacting their health, daily lives, and wellbeing. Despite progress in awareness and treatment, we know many people with Crohn’s or Colitis still face unmet needs in care, support, and understanding from the broader community and healthcare system. Inflammatory Bowel Disease (IBD) services are overstretched and under-resourced, which is having a damaging impact on the mental and physical health of those living with the conditions. We’re now calling on politicians, pharmaceutical partners, and leaders in the charity sector to Face the Facts in the IBD UK report and confront the urgent issues facing IBD care.”
Though the politicians and businesses need to make changes, it is the voices from the disabled community that hold so much importance. Today I am sharing my disability story, but if you would like to speak about your health journey then get in touch with us today!
Crohn’s and Colitis Awareness Week 2024
My name is Sam Cleasby and I am a passionate advocate for disability rights and a prominent voice in the Inflammatory Bowel Disease (IBD) community. As a blogger, speaker, and activist, I share my personal journey with Ulcerative Colitis and living with a stoma to break down stigmas and promote understanding. Through my advocacy work and blog, I aim to empower other disabled people facing similar challenges, raising awareness about the realities of IBD and the impact it has on daily life, I also work for Purpl Discounts! My work highlights the importance of visibility, compassion, and support, and that is why I am such a huge supporter of Crohn’s and Colitis Awareness Week and the work of Crohn’s and Colitis UK.
My Personal Story of Life with Ulcerative Colitis
I have lived with Ulcerative Colitis for over twenty years, over this time I have seen understanding of the public and stigma of living with IBD improve. When I was first diagnosed in 2004 I very quickly I realised that having a disability that revolved around poo and toilets was embarrassing and something that people simply didn’t want to talk about.
In 2013, I had surgery to remove my large intestine and had an ileostomy formed, as I began life with a stoma, I was filled with shame and fear. I searched online and I found medical advice but no one was talking about the real life implications or sharing their day-to-day lives and so I decided to speak out. I began my blog So Bad Ass as a way to share my journey and very quickly I found a huge audience of people who also had Crohn’s Disease or Ulcerative Colitis or had a loved one who did. When I was getting millions of views on my blog, I knew that this was important and positive change for the disabled community and I am proud that I inspired a generation of people to talk about their own health journeys.
Positive Change for Disabled People
The impact of stigma and how society sees you as a disabled person is enormous, and as someone who doesn’t always have a visible disability (sometimes I use a wheelchair or mobility aid), I found the judgement of others incredibly difficult. I wrote an open letter to ‘the woman who tutted at me for using a disabled toilet’ about how it feels to be judged for using accessible facilities as someone with an invisible disability and that post went viral. It was read millions of times on my blog and shared in newspapers, magazines, TV and radio shows all over the world. From that point, Crohn’s and Colitis UK launched their ‘Not Every Disability is Visible’ campaign and now you see these signs all over the UK and the world, that is something I am very proud of!
Though things have improved in terms of treatment and public perception, there is still a long way to go. To address these gaps, Crohn’s and Colitis UK commissioned the IBD UK report – the biggest ever survey of people living with Crohn’s or Colitis in the UK. Over 17,000 people shared their experiences, and the report found that IBD services are struggling, as are the people living with IBD. Treatment, awareness, care and support need to be improved upon as they affect the lives of 500,000 people in the UK.
There is also the financial impact of living with any disability, we know that the Disability Price Tag affects disabled people, disability charity Scope say that cost is £1010 a month for a disabled person to have the same standard of life as a non-disabled household. Here at Purpl Discounts, we attempt to off-set those extra costs through discounts exclusively for disabled people.
Purpl Disabled Discounts and Me
There have been many times over the years when my health has been incredibly poor, I have had 14 major surgeries and I now live with a stoma, nerve damage, chronic pain and chronic fatigue. It has helped me to use these difficult times to help others by sharing my story. In 2022, I had an abdominal reconstruction to attempt to resolve hernias and damage from past IBD surgeries. Unfortunately, my bowel perforated and I got Sepsis, I had emergency surgery and ended up in a coma on life support. I spent two months in hospital and another six months recovering at home with daily IV antibiotics before being strong enough for more surgery.
I have learnt that life is short and we never know what is around the corner, so now I take every opportunity I can and live my life to the fullest that I can with an energy limiting condition! I use my experiences to help other disabled people through advocacy, blogging, activism and academia, I am currently doing my Masters in Disability Studies. And I also work for Purpl because I believe so strongly and passionately in doing anything I can to support positive change for the disabled community and Purpl is such an amazing example of a business that is by disabled people, for disabled people.
If you are disabled and live in the UK, then you should join Purpl, take a look through the ways you can get verified here. As a Purpl member, you get access to brilliant disabled discounts from all your favourite brands. We have new brands joining us every day and we work closely with them to create fantastic and exclusive discounts for people living with disabilities. We are used to a Student Discount and a Blue Light NHS discount, well Purpl was formed by Georgina, who lives with MS, to fill that gap for disabled people. We are a start-up company with a core team of staff who are disabled and have lived experience of disability, as the saying goes ‘nothing about us, without us!’
Invisible Disability and Purpl Discounts
Sometimes Crohn’s disease and Ulcerative Colitis are said to be ‘invisible disabilities’, because often you cannot see the physical effects of the disease on the outside, I think this leads to people with IBD to feel that they aren’t ‘disabled enough’ to get help, support or financial aid. But after 20+ years of living with Ulcerative Colitis, I know that there are so many areas that mean I have to spend a lot more than I would if I did not have this illness. Laundry, toilet paper, water rates, specialised diets, clothing in every size from an 8 -20 as my weight fluctuates. Not to mention times when I simply could not work, when I was so unwell I was unable to leave my bed, or when I had multiple surgeries.
There is a fear in people who live with chronic conditions or invisible disabilities that they cannot claim PIP, or ask for extra access needs. This fear holds them back and can often lead them into a vicious circle where they struggle more and worsen their conditions. Have a read about Personal Independence Payments, and also about things like the Access Card, which gives you proof of your condition and additional access needs. And then sign up to Purpl Discounts and get your disabled discount codes to hopefully make life a little easier!
Crohn’s & Colitis Awareness Week and You
This week is Crohn’s and Colitis Awareness Week, so what can you do to join the cause and support positive change for disabled people in the UK? Here are some ways you can get involved from Crohn’s and Colitis UK:
- Share your story and post your photo on social media using #FacetheFacts
- Join a Crohn’s and Colitis UK Virtual Social Event
- Print a Poster to share in your work, social space or home
- Talk about your own experiences of life with IBD: on your own social media or join the Purpl members group
- Share your story with Purpl: email me on [email protected] to write your own blog!
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