“Crohn’s and Colitis are serious conditions which aren’t taken seriously. They cost the NHS as much as cancer and heart disease per patient, and can be just as devastating, but they lag behind in the recognition and support needed to improve lives. Unacceptably high levels of emergency care and delays to diagnosis, investigations, and surgery, exacerbated by the Covid-19 pandemic, are signs of services under pressure and a model of care which is not working. The report sets out a vision for change – this needs to be prioritised by governments across the UK and supported with a defined long-term strategy.”
Sarah Sleet, CEO at Crohn’s & Colitis UK and Chair of IBD UK.
We aren’t taught about health in school and no one prepares you to be diagnosed with a lifelong condition. I skipped through life up thinking I was untouchable until the age of 19 – that’s when it started: The bloating, stomach pains, tiredness and blood in the toilet bowl. I ignored it for months – “I’m 19 and this will go away” – I told myself every time I left the bathroom. It got to the point when I couldn’t ignore it anymore and I went to see a doctor for the first time – not knowing that my life wouldn’t be the same ever again.
The first doctor I saw told me I might have cancer and the second told me there was nothing wrong with me. I went from hospital to hospital, doctor to doctor in an attempt to give this pain a name. In that time, I was spending my days in bed and my nights camped down on the bathroom floor. Doctor number four was a kind man, with the worry of a thousand patients sitting on his brow. By this point I had been experiencing symptoms for six months; my skin was grey, my spine and pelvis were now my most prominent feature and I was drifting in and out of consciousness as he looked through my labs. “You have Ulcerative Colitis” he said. I shrugged and tried not to throw up on his royal blue carpet. At the time, as long as it had a name, it had a cure right? Wrong. I rattled my way out of the appointment – now a walking pharmacy with the amount of medication I was taking.
For the entirety of 2017 I spent it in hospital or in bed going through endless tests and rounds of medication. I was supposed to be at university and living my best life but instead my body had put me in purgatory.
I was trapped in the four white walls of one room – angry, upset, tired and a little hungry [but I dared not eat for the pain that would ensue moments after]. It was a lonely existence with nothing but my laptop and social media as an escape beyond my hospital bed. One day, pained with the maddening similarity of each day and no WIFI in the dark depths of the hospital, I started to write. Hammering at the keys of my computer, I described every test, medication side effect and hospital appointment. Pouring every emotion onto the page, I felt the world lift from my shoulders.
My words were for the few and not the many in the beginning. I chose to share it with my friends and family to take them along my journey with me and by writing down my experiences, it not only helped me open up about a condition I had tried to keep behind the bathroom door, but gave me the confidence to find others like me. I searched #InflammatoryBowelDisease on Instagram – I’m not sure what I was expecting to find, images of toilets perhaps? Instead I found a huge community – people sharing experiences online and for the first time in over a year I felt like someone understood me. I could laugh about the poo stories and compare hospital stories with people from all over the world.
The more I talked to the community, the more I realised I could help someone feel less scared and alone. I chose to share my words online and the more I shared, the more I saw the importance of opening up about a stigmatised condition. From that moment on, the ripple turned into a tidal wave of support. People from all over the world were reading my words and most importantly they found some comfort in it they weren’t alone.
Almost a year after my very first hospital appointment and I was losing more weight and my symptoms only getting worse despite the medication. “You need surgery. You can’t try any more medication” my GI said. I pleaded with him and asked if I could finish the last five months of my degree. “You won’t make it that long – you won’t see the end of your degree if we don’t do this now,” was the reply. The harrowing reality of IBD and finally knocking into my stubborn brain that this condition was lifechanging. I was admitted to St Marks Hospital to have my entire colon removed and an ileostomy created. An ileostomy is a type of stoma – my small intestine pokes through my abdomen by about 2 inches and a bag goes over the top to catch waste. Put simply, I now poo into a bag and have done for the last 3 years.
In the year post-op, I lived my best life! I had gone from being chained to a toilet for over a year, to finally free from my problematic bowels. Nine months after surgery, I was due to go back to university; more excited for the social life, than the studying. Going back to my history degree was tough – I didn’t get the same satisfaction from learning about The French Revolution or writing papers on Thomas Jefferson anymore as I did from writing about my IBD and stoma bag.
My final year flew by – most likely down to too many jägerbombs – and the time to look for a job. My university told me my history degree would open SO MANY doors for me – doors to a library, museum or school – none of which was appealing to me. I got excited about health and there wasn’t much with a heart still beating in a museum, so I widened the net of searching to include social media and healthcare. I didn’t have any professional experience, but I had an endless amount of lived experience. After a million applications and lots of ‘sorry but…’ emails I got a job in healthcare communications. Jumping for joy at the prospect of getting paid for my passion, three months after I finished my degree, I was on my first ever commute into a shiny new office, to a shiny new job. I dived headfirst into the world of health and the rest is history.
When I was looking for a job I made a pact with myself: I had been through too much to end up in a job I didn’t enjoy, so I was going to make sure every day I left the office I would feel like I’d made a difference; knowing the work I am doing is contributing to helping others. Being diagnosed with IBD threw my life upside down but without the diagnosis, I wouldn’t be where I am now – in a job that I love, using my experience to help others outside of my condition and disability.
The hidden impact of IBD: IBD UK National report shows Crohn’s and Colitis healthcare need improvement
Half a million people in the UK live with IBD, but the condition is largely stigmatised and makes it difficult for patients to speak up. By talking about experiences, it allows to break own the taboo associated with IBD and push for change in IBD care.
IBD UK – a coalition of health specialists, charities, professional organisations and Royal Colleges – have revealed the real impact of IBD on the NHS and how IBD care in the UK is costing some patients their health and the NHS millions.
1 in every 133 people in the UK live with IBD – a number significantly higher than previously thought.2 The IBD UK report shows services are under increasing strain; struggling to meet the 2019 IBD Standards.1To improve care, highlight the growing numbers of patients with IBD, we need to see IBD recognised as an NHS priority with a clear government strategy over the next 5 years. Sharing personal stories is one way we can impact change! ‘Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change’ consulted over 10,000 people with Crohn’s or Colitis and almost three quarters of specialist IBD health services.
Let’s not go back to normal as we come out of the pandemic. If you are an employee who thinks your boss may be interested in supporting their staff with IBD, o you are an employer who would like to know more, click the link below for resources.
Read more about the IBD UK report via this link.
- Jones G, Lyons M, Plevris N, et al. (2019). IBD prevalence in Lothian, Scotland, derived by capture recapture methodology. Gut. 68: 1953–1960. 10.1136/gutjnl-2019-318936; Crohn’s & Colitis UK (22 January 2021). Study shows over 50% more people in Wales have Crohn’s or Colitis than previously recognised. http://www.crohnsandcolitis.org.uk/news/study-shows-over-50-more-people-in-wales-have-crohns-or-colitis-than-previo. Hamilton B, Green H, Heerasing N, et al. (2020). Incidence and prevalence of inflammatory bowel disease in Devon, UK. Frontline Gastroenterology. Online: 24 June. doi:10.1136/flgastro-2019-101369
- IBD Standards, IBD UK, 2019. <https://ibduk.org/ibd-standards>
Blog post was written in collaboration with Crohn’s and Colitis UK and Billie’s employer.