Alicia’s Story – Ulcerative Colitis
"I remember being on the bus back from college one day and felt the most excruciating pain I’d ever had in my stomach. I was 17, terrified and in pain"
Alicia's story from diagnosis of Ulcerative Colitis (IBD) to sharing her story and experiences with thousands as she travels the globe.
My first memory of Ulcerative colitis was seeing blood in the toilet. I googled it and thought the worst. But I thought it’d pass. Days turned to weeks and months, each time I went the toilet more and more blood appeared. Clots. I remember being on the bus back from college one day and felt the most excruciating pain I’d ever had in my stomach that I needed to sit down and get off at the next stop. Even this wasn’t enough for me to raise my concerns, I was 17, terrified and in pain.
It wasn’t until my family started talking one evening about a time a family member was really ill, I started to ask questions about their illness and the answers felt very familiar. I opened up that evening and my Mum got me to the GP the next day. After a rectal examination I was told that it’s most likely an anal tear, but thankfully my mother knew best and insisted I was investigated further. This was finally agreed but seen as non-urgent so after 6 months of waiting I had my first of many many hospital appointments.
Aged 18, I was diagnosed with Ulcerative Proctitis.
It was a bizarre sensation, I was partly relieved there was an answer to feeling so rubbish but also scared at the information given, confused the specialist addressed the condition like there was no cure. Looking back it took a really long time to comprehend this was my forever.
The next two years was a rollercoaster of one month being OK, the next not so fine, blood, mouth ulcers, fevers, aching joints, abdominal pains & weight loss.
But one day, my dad had to pick me up from my nan’s bathroom floor. He took me straight into hospital. I was told that since I got diagnosed (Nov 2010) I was never fully in remission, my pain threshold had just increased. Back to steroids it was and once things settled down a little I had my first colonoscopy.
This revealed that again my rectum was inflamed, further up it seemed normal, however after seeing all of my colon they realised my inflammation was patchy throughout. 20 years of age and I felt like a small terrified child again with no control of what was going on.
November 2012 I was informed I was misdiagnosed with Ulcerative Proctitis 2 years prior….I had Ulcerative Pancolitis.
This meant a new treatment plan; immunosuppressant Azathioprine. The first few weeks taking this medication made flares seem like a walk in the park. After persevering though, I slowly started to gain my normality back.
I felt like I had missed out on a lot of the cliche rights of passages at university such as freshers. I missed out on the first few weeks of my 2nd year at university due to recovering from my flare, a social aspect a part of me didn’t want to miss as it was when everyone swapped their summer stories from back home. Yet the other half of me was relieved, who wanted to hear about a 20 year olds’ health problems?
Azathioprine gave me 5 amazing years of mostly remission. I met my boyfriend (now Fiancé), hit milestones such as graduating, moving out from home officially, found the industry I love working in and most importantly, I travelled.
It was around the time I had my first job in the industry I wanted to build my career in that I started feeling differently. Bad days became more frequent, but not so much I thought it was a flare, these symptoms were different. It turned out that the Azathioprine was causing toxicity. We needed to reduce my dosage but even after that I still felt rubbish. Then the all too familiar feeling of feeling like I wasn’t in control of my body came back.
Cue a stupid decision….I went it alone and went cold turkey. I read a few articles of success stories of being medication free and in remission. Years of treatment plans surely done the trick? I knew my trigger foods & kept my fitness levels up, knew the importance of keeping my stress levels low…easy. It seemed to work for a while. But one day I had a water infection. I needed antibiotics. This started my most recent and longest flare.
July 2018 I entered a stubborn flare. So stubborn it took a year. I started the flare optimistic, these things pass, it’ll be a course of steroids and voila! This wasnt the case. My disease was so hard to control as I didn’t have any medication in my system. It was like being back to square 1.
It has been incredibly difficult to stay positive and optimistic over the past year.
All of this happened whilst buying our first home, starting a new job and needing to travel abroad for my job. I panicked and thought I’d need to press pause. No way I can travel abroad…or could I? I searched all the forums I knew, googled away and found IBDPassports, an amazing wealth of knowledge dedicated to those who travel with IBD.
“I’m a firm believer that awareness is key to a cure. It’s also key to letting people know that you aren’t alone. Charities such a Guts UK enable not only this but also research & projects. Research that could get someone diagnosed quicker. Because the earlier your diagnosed the quicker it is to adapt and take control.”
So I approached my IBD team to explain my need to travel & if it was feasible. I honestly expected a straight up no. Instead their response was to do whatever we could to ensure I have a good quality of life & not let IBD get in the way. We came up with a treatment plan for whilst I was abroad, had back up in place, discussed the best biologics for my lifestyle and provided me with a medical letter. I felt empowered, I felt in charge of my body again.
Being diagnosed at 18 was a blessing in disguise looking back; it forced me to take responsibility, understand my body, know my limits & value my real relationships with people. At the time though it felt isolating, confusing and hopeless. This disease can be horrible and exhausting, but its also taught me patience, perseverance and strength.
The longer I had the disease the more I opened up and I now know I have my family and friends to rely on. However social media had been my constant support throughout from day 1 when I was lost and didn’t understand IBD. The power of the internet really is amazing.
There’s a huge group of strangers all sharing their own experiences with the different variations of inflammatory bowel disease that keep one another motivated and supported. The least I could do is give back.
After reading so many people’s worries about travelling with IBD (and having had those worries myself) I wanted to show the reality of travelling, not only in remission but also whilst flaring. We can accept that throughout our lives we will encounter flare ups, but instead of pressing pause, we can learn ways to see the world, adapting our travels to how our disease is behaving. Sometimes that means resting, sometimes that means taking it easy, sometimes it means taking precautions but sometimes it means not holding back. I hope I can at least inspire one person to see more of the world without their illness hindering them.
The world is ours to see, chronic illness or not!
Alicia (aka @aliciardillon) raises awareness of IBD and shares her travels across the globe on her Instagram page.