Living with Ulcerative Colitis

I was 15 years old when I was diagnosed with Ulcerative Colitis (UC). Prior to my diagnosis I spent around nine months trying to hide my symptoms from those around me. After all ?? and ?? was a taboo subject and not something most teenage girls really want to talk about.

I remember going to Boots on school lunch breaks using my lunch money to buy Imodium in the hope that it would solve everything. Everything came to a head when our family Christmas holiday was cut short because I could no longer hide my symptoms and I was in extreme pain.

During a flare up of UC I could be going to the toilet up to 20 times a day, and passing blood within my stools. I would be bloated which would cause wind and I would also lose a lot of weight. There would be an intense, knotting type pain in my stomach that wouldn’t go away. I would feel weak and fatigued, my blood levels in my iron would drop and anaemia would set in.

Fortunately I was referred by my GP very quickly and was seen by a Gastroenterologist, had a colonoscopy and was diagnosed with UC. As a 15 year old, the worst part about the whole thing, at that time, was that I missed out on a trip to Florida with one of my best friends. Oh to be blissfully ignorant, and for that to be the only problem I had in my head.

Fast forward to my sixth year at school, it was exam time and I took a UC flare up and was hospitalised for a week. Fortunately I didn’t miss any exams but I did miss the last couple of weeks of sixth year, our leavers day and actually physically being able to close that chapter of my life. On top of this I was put on a three month course of steroids to help reduce the inflammation and to help bring me back to remission. I started university with a “moon face” – this is a rounding of the face that happens when taking steroids – and gained two stone in the space of a few months due to the steroids.

I made my way through university, and then again in 2012 I was hit with another flare up and hospitalised during my Honour’s Year exams. Again, I was fortunate enough not to miss my exams and the university were extremely accommodating being able to give me extensions in order for me to be able to finish the year.

For years I hated how I looked in my graduation pictures, the “moon face” was back as I had been put back on the steroids. I know it may sound vain but it is a difficult pill to swallow when you go through so much pain with a condition, having to take medication every day, for you to then look at yourself in a mirror and not recognise the person looking back at you.

After my second hospital admission, I was put on a drug called Azathioprine which is an immunosuppressant. Again, being in my early 20s I was quite na?ve (read: stupid) and didn’t think much about taking it or even asking about side effects. I was told by the consultants that this was the best solution at the time to keep my UC at bay.

One of the major risks of having UC is that you are at an increased risk of bowel cancer. Whilst the inflammation is active, the risk of bowel cancer is greater, so in order to reduce the risk the ideal situation is to keep the UC under control, to keep inflammation down. However the chance of getting bowel cancer, even when UC is under control, is still higher than the general population.

In 2014, whilst being on Azathioprine I was unfortunate to develop skin cancer as a side effect. Azathioprine makes you more susceptible to UV light and despite always being extremely careful in the sun (factor 50 always!) I had my first encounter with a non-malignant skin cancer, a basal cell carcinoma (BCC) on the side of my face. Fast forward to 2019 and I had a melanoma removed from my back.

In 2021 I fell pregnant and I was determined that I was going to be strong enough for my little one. I continued taking Azathioprine throughout my pregnancy in order to keep my UC at bay - having a flare up during pregnancy can cause a whole host of issues, miscarriage and premature birth being amongst them. At around three months pregnant I noticed a change to the skin on my forehead and immediately recognised it as a BCC, and had it removed a few months later.

I thankfully had no issues with my UC during pregnancy, however I was monitored carefully by my antenatal team. I was taken off of Azathioprine (put on a drug holiday as the doc called it), shortly after having my little girl. I had a wonderful year enjoying maternity leave and spending lots of time with my baby and felt better than I had done in years.

In May this year I went for a routine colonoscopy and in July I was told that my colon was inflamed. I was in complete shock, I felt so well and wasn’t presenting any symptoms. I was told that I qualified for a relatively new drug, also an immunosuppressant but one that targeted the colon specifically, that didn’t come with the same level of risks as Azathioprine.

At the end of July I had my first Vedolizumab infusion, my second in August and I now administer an injection every fortnight, which I am really struggling with. I am due to meet with a specialist IBD nurse soon to see if the drug is effective. If it is I will be on it for the long term (around 8+ years), until my immune system finds a way to work around it. If the drug isn’t showing signs of being effective then it’s back to the drawing board in terms of deciding on other treatments.

There is no doubt about it, UC has impacted my life majorly – both mentally and physically and in the superficial and serious moments of life.

I have been fortunate enough to touch wood not have been hospitalised by my condition for a very long time now, however I have had flare ups during this time. Working and living a normal life with this disease is difficult, and I can honestly say that I haven’t felt 100% well since my early teens. It is a physical and mental battle every day to get up. As a 33 year old people laugh at me when I say I have joint pain in my knees and hips. Having UC makes me more prone to inflammation in other areas of the body so this affects my joints, and it has also previously affected my eyes, a number of years ago.

People encounter me and they don’t believe there’s anything wrong because “you don’t look not well”, and people often doubt me or don’t believe how unwell I feel because of my age and the way I look.

Over the course of my working life (17 years and 8 jobs later) I have encountered many difficult situations. Working in retail when you have a condition that you need to nip to the toilet at any moment in is always difficult, imagine scanning things through a checkout thinking in your head that you’re going to s**t yourself in front of a customer and your colleagues, and what reaction they and your manager might have! The office life was for me, however that isn’t always so easy either, being on a telephone call with a customer thinking “am I going to have to hang up abruptly and run to the toilet and what are the repercussions of that”? There is also the embarrassment of having to nip to the toilet multiple times a day, for long periods of time and getting funny looks from your co-workers when you go/return.

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Mentally it can be torturous thinking about catching up with work if you have been off sick, or at lots of appointment. The mental turmoil of planning your day/outings based on where you are, if there are toilets nearby, will you be able to be in a car/public transport for a certain length of time, what if you are caught in traffic etc. There are so many things to think of in order to try and live and lead a normal life that others take for granted.

For employers and managers it is essential to be equipped with the knowledge and tools to be able to deal with people with pre-existing medical conditions. Working and living with an illness/disease is hard enough, without the additional stress and worry of approaching someone for time off for appointments or being unwell.

For colleagues and customers it’s about having an awareness that not everything can be as it seems, and that people can be really struggling. You never really know what someone’s going through, so be kind and empathetic, and try not to judge someone as you never know what someone is going through.

?I couldn't have made it this far without the love and support from my loved ones, for which I am eternally grateful for.

Across the world 1 in 6 live with a disability and it’s estimated that around 1 billion people live with a hidden disability, so please always remember don’t judge a book by its cover.

For more information on Ulcerative Colitis and invisible disabilities, you can visit:

https://crohnsandcolitis.org.uk

https://www.nhs.uk/conditions/ulcerative-colitis

https://hdsunflower.com/uk/insights/category/invisible-disabilities