Thanks for being here
with us.
We’re besties Clare and Lucy. We first bonded at the school skate ramps back in 2021 with a shared passion for hospitality…conversation soon turned to covid, sheltering and….UC. Little did we know we would become bestest of friends very quickly!
Since 2021 we’ve both struggled with our colitis symptoms and we’re sure covid is to blame, after being in remission for many, many years. But that’s another lengthly conversation for another time. We’d love to introduce ourselves properly…
Meet Lucy
In 2008 my life changed forever when I discovered I had two life affecting diseases: Ulcerative Colitis (UC) and Dilated Cardiomyopathy (DCM). I knew something was wrong with my ‘tummy’ from a young age (which gave me an eating disorder) and in my latter teenage years the symptoms worsened at the exact moment of my uni final year exams and some family trauma when my brother almost died.
I was told repeatedly for years I had IBS and then finally after going private for a consultation, I was given a colonoscopy and diagnosed with UC.
In the same year after my brother was very poorly I was tested and diagnosed with DCM, a heart condition. This is a genetic condition due to a gene defect that my mum, brother and I have (Titin gene). At that point in my life I was a marathon runner and enthusiast and had to drastically change my lifestyle to stay well. You can read more about that in my old blog.
I’ve always been lucky enough to have minimal episodes or flares with my UC. This year (2024) I had a very big flare and was in hospital for 3 weeks where I was very poorly. I lost 10 kg and my heart really struggled.
I’m a very proactive, positive person but that doesn’t stop the grouchy days when I am down-right fed up of being symptomatic 100% of the time. I’m a deep empath. I have always felt everything very strongly and this is a super power within my body, I always know how I am. Throughout my life I have tried to best manage my lifestyle to ‘keep my diseases happy’, as I put it. I’ve have and continue to do a lot of research and lifestyle tweaking to try and improve my symptoms of chronic pain, fatigue, constipation, bloody stools and more. Through The Colitis Conversation I will detail more of these learning and the tiny nuances of my experiences in an effort to help others who may benefit from learning about the best decisions I’ve made and the mistakes I’ve made along the way.
37 years old, she/her. Based in Surrey, UK. We live 1/3 of the year in Italy. I run a global platform for couples planning Italian weddings and plan gorgeous Italian weddings.
Meet Clare
II am not an over sharer. I do want to share with you my life living with UC if it will help you or someone you know. I’m about to share some personal UC symptoms which are not pleasant to read. 2008. I was diagnosed, by this point I was still well….ish and was ‘just’ dealing with a red blood splattered toilet bowl when I went for a number 2 (that was my terminology back then). I downplayed my rising fear and symptoms because I was mortified.
After months of bloody symptoms a locum Dr finally clicked it was Colitis, I thought great I’m going to get better now and that was that. I was given a list of foods I could eat - crumpets, croissants, white bread, white pasta, cheese, pears and chicken. I was relieved and happy with that diet, content I was finally being looked after by professionals.
Skip a few years with no UC. 2013 I spent an entire Summer being house bound due to severe symptoms, it started with needing to go to the toilet when I felt nervous and by the end of that summer I could only crawl to the loo in agony, but still hopeful I’d get better.
I couldn’t even manage a bite of a boiled egg without instantly becoming doubled over with painful cramps, shooting pains in my tender burning stomach whilst feeling like I was going to explode…sat on the toilet I would be in so much pain I’d cry out then sit shaking desperate for the pain to go.
I’d hold onto the walls on my way out feeling completely traumatised, sometimes my knees would wobble. I lost 10kg, I got to the point where I didn’t have any strength left to battle these symptoms.
That’s when I was admitted to hospital. I remember the journey laying on the back seat just gritting my teeth and not moving an inch.
From then on I had 2 flares every other year each lasting about 3/4 months, sometimes longer.
My normal protocol was to be admitted to hospital for intravenous steroids then follow a course to come slowly off them. In 2019 I changed my mind set. I had to. My son wasn’t even 2 years old and I was damned if I was leaving him to go to hospital for 3 daysand nights.
That’s when I took charge of me. I took ownership of my symptoms and made them my responsibility not the Drs or even my lovely UC specialist. I then spent the rest of the year and the following one finding out as much as I could about healing UC organically, naturally. I am always learning, you never stop.
I’ve not been admitted to hospital since. I have had flares but I’ve not needed steroids! The Colitis Conversation for me is about my journey, findings and friendship with fellow UC warrior Lucy, the driving force behind TCC and our love for ourselves and you living with Ulcerative Colitis.