Clinical FeaturesEndocrine/MetabolicGastroenterology

Ulcerative Colitis: A Patient Perspective

Ulcerative colitis (UC) has been part of my life for 15-16 years, just over half the time I’ve graced the earth. It’s actually a bit difficult to remember what it was like before my first flare. UC is a strange companion sometimes, especially given the relapsing-remitting nature of the disease and the fact that often the best course of treatment involves supressing the immune system. In an era of quickly-spreading infectious diseases, it can be quite alienating to have a chronic illness that no one has heard of or wants to speak about as it involves the lower gastrointestinal tract. It can be extremely challenging and debilitating in many ways and yet I am adamant that it will not defeat me or people in a similar situation.

My Road to Diagnosis

When I was 14, I experienced a very bad stomach flu that lasted a week or so. This flu kicked off a year-long UC flare-up that left me very sick, skinny and emaciated. I was visiting the toilet 20 plus times a day (all bloody diarrhoea), losing my usual voracious appetite for food and sleeping as soon as I got back from school. My menstrual cycle ceased completely as I lost more and more weight. Some people in my life feared that I’d developed an eating disorder while others saw me looking gaunt and losing some of my hair and thought that I had some sort of cancer. I tried to keep going as usual in school and after school activities, but in the end, something had to give.

At age 15, I was hospitalised for a month, very swiftly diagnosed with UC (pan colitis) after a series of tests and began treatment. No one in my family or friend network had ever heard of inflammatory bowel disease (IBD) and almost everyone thought it was the same as IBS. No one could understand why I had been so severely affected by something they regarded as innocuous. As a result, and I suppose understandably, I didn’t really want to talk about any of it with anyone as I felt it would only lead to an argument or an insult.

Many people in my life unfortunately had the idea that IBD was caused by psychological stress and would tell me to ‘just relax’ a lot. This really bothered me (and still does). Everyone has a certain amount of psychological stress in their lives – it’s part of being alive and being able to adapt and cope with challenges. Naturally, an overdose of it presents problems in us all and can exacerbate many different types of illnesses, including IBD. It’s not causative though. Pointing the finger at an IBD patients’ stress levels as the reason they are unwell at all is extremely inaccurate, unhelpful and unfair. I always knew that stress wasn’t causative and read research papers to prove my point. IBD is of course part genetic, part environmental. I read all about it in immunology textbooks and yet my arguments fell on deaf ears. I was the stressed girl who got sick at important life moments. It took many years to fully accept that people were going to think things about me that I couldn’t change and that I could still ‘own’ my situation and know who I was.

Managing IBD Over the Years

After diagnosis and a long period on and off steroids, I was prescribed immunosuppressants for about 5 years. I also stayed on a maintenance dose of antiinflammatory medications. I never really experienced as bad a flare as my initial one, although I did unfortunately catch swine flu when I was in transition year in school and that wiped me out completely. I also had the odd extraintestinal symptom including skin, eye and joint inflammation but again these tended to come and go. I was lucky in many ways that I had so many good years responding well to my medications and in remission. It meant that I could travel and live my life without complication. It was only after my most recent flare-up that I switched to biological therapy. This wasn’t without its own challenges. I have frequently picked up nasty infections, including shingles, urinary tract and respiratory tract infections which can make life a little more uncomfortable or severely interrupt it.

Having IBD in Adolescence Versus Adulthood

Being diagnosed with IBD as a teen was both a relief (to know what was going on) and a scary revelation. The symptoms of UC can be quite frightening (particularly the bloody stools and chronic abdominal pain). Being told I would be on medication for life from a young age was also quite daunting. It’s not something you envision for yourself as a teen – when you really just want to be normal. I always hated taking my many tablets in front of people and covered up my arms that were bruised from venepuncture. I didn’t want anyone asking questions. I think there definitely was a sense of shame in it all.

When I was undiagnosed, I was extremely worried that I had bowel cancer and didn’t know what to do. It can be quite difficult to talk about bowel-related topics, especially as a young person, when self-image is everything. I really didn’t want people noticing how often I went to the toilet or for how long I was there, so I tried not to go.

In all honesty, when I saw bloody stools, felt the extreme abdominal pain and had no energy for life anymore, I really thought I was going to die. I was sure of it and almost became resigned to it. When I was brought to see a specialist, I was so relieved to be told that I had IBD and that it was treatable and manageable. I couldn’t believe that I could feel normal again – which is what happened when I started taking steroids for the first time. It was like magic. I was going to live.

Mental Health Challenges

As previously mentioned, at first I was unwilling to talk about what IBD was and how it impacted my life. Since I was diagnosed as a teenager, I was afraid of how people would view me if I spoke about what was going on. I actually ended up missing my Junior Cert because my first flare was so bad. A lot of people in my secondary school noticed my absence during the Junior Cert and assumed I’d had some sort of breakdown due to exam stress. I never wanted to correct them in a way, because I wasn’t yet comfortable to talk about my UC. This seriously affected my confidence for many years. No one really looked at me the same way after this first flare and I felt that I was required to somehow prove my worthiness or abilities when I was in school or outside of it, so people didn’t regard me in such limiting ways. I couldn’t wait to move away from secondary school – to college and work- where no one would know anything about me ever having medical problems. Of course, IBD never leaves and pretending it doesn’t affect me is never the answer.

Dealing with other challenges

in life, I learned that there was nothing to be ashamed of in having UC or any other chronic illness and that speaking openly about my symptoms was actually quite liberating. These days all of my close friends and family know about my UC and my partner in particular is so supportive. They all understand that some plans need to be cancelled and sometimes I really need rest, especially during a flare.

Even with a supportive network, UC can really take its toll on mental health. Getting the right support is essential for coping with the anxiety that goes with searching for toilets everywhere you go and the depression of knowing your own limitations. One thing I still struggle with is not being too hard on myself. Society can be rather ablest and unforgiving, but that’s really not anything I can control. Being transparent about the difficulties of having IBD is really important to me now. I also really like to share the many good things that have happened over the years with people as my resilience fills me with a sense of pride. When I was in transition year for example, following my first recovery from a flare, a couple of good things happened in school. I starred in my school play and set up a small online business. I also realised that I wanted to be a scientist.

My Life Now

I have since completed 2 degrees (BSc and MSc) in biomedical fields and travelled during both (to Sweden and the US) to complete my thesis projects. I worked in science for a few years between degrees and published some articles in paediatric neurology. Eventually I was awarded a joint-funding to complete my neuroscience PhD in the Royal College of Surgeons. At the same time, I got heavily involved in science communication and won a national competition for a video I made about epilepsy and circadian rhythms. Ironically, I study the immune system in a great amount of detail and often attend talks about IBD in the preclinical research context. Hearing speakers discuss the debilitating nature of UC and Crohn’s is oddly liberating too. They are severe diseases after all and ‘just relaxing’ won’t cut it. Hearing about all the new avenues of research is also exciting and brings with it a sense of home that IBD won’t always be such a burden.

My UC has remained part of my life and as mentioned above can sometimes interrupt my studies/work. Being open with my employer and my funders is important to ensure that I can finish my project and achieve my goals. Again, I still struggle with typical UC intestinal symptoms when I flare but also as I’ve gotten older, I have experienced more extraintestinal symptoms that I’m not always prepared for. Kidney stones, chronic pain and severe fatigue often dictate my productivity in my work and can frankly be quite disheartening. The focus of my IBD care often doesn’t really cover my extraintestinal symptoms and it can become exhausting trying to advocate for oneself in order to be heard and treated. Being taken seriously is extremely important in any medical scenario, but especially in IBD where sometimes the mental and physical toll of typical and atypical symptoms is underestimated.

Involvement in decision-making for my own health is paramount, especially in a disease that often robs you of control in many ways. Lastly, owning and embracing the chaos of IBD is essential for me. I have learned to accept it and am still learning to be kinder and more forgiving of my body, that after all is only doing its best.

For further information visit

Read the full magazine: March HPN

Read our Latest News

Leave a Reply

Your email address will not be published. Required fields are marked *

Please Confirm

This website is only for the eyes of medical professionals. Are you a medical professional?