Living with a ‘Chronic Illness’ whilst at University.

This articles is a joint venture between two students. Thomas Madden, a final-year undergraduate studying English Language and Linguistics and Daisy Warner a third-year undergraduate studying a joint honours in English Language and Linguistics and Hispanic Studies. We have decided (together) to write an article about our university experiences living with and managing a chronic illness. Within this article, you’ll get the best of both worlds, I have Crohns disease and Daisy has Colitis. With introductions spent, I guess now would be a great time to divulge our stories.

Tom’s Story

I suppose I should introduce myself and a few short sentences surrounding where it all began (when I got my IBD membership, so to speak). I was diagnosed with Crohns disease at the age of thirteen, so I suppose I have always had Crohns disease throughout my ‘academic life’. Getting diagnosed with ‘Crohns’ was no real shock to the system, both my Dad and Uncle are also members of the long standing medical condition. It was no life-changing revelation or something out of the ordinary.

Me and my sisters (yep, we’re triplets)

Instead, it was an illness that our family had learnt to live with for years and something I needed to accept. When I was first diagnosed, I had been given almost every combination of oral medication possible (i.e. Pentasa, Azathioprine). None of these combinations seemed to work. They made my health deteriorate and steroids became the only viable medication. Having been admitted to the hospital three times in less than five months, dropping to below 45kgs at fourteen years of age, it was clear that standard oral medication was of no use.

By the time, I was fifteen I was prescribed eight-weekly infliximab infusions. It was the only medication up until this point that served me well and kept my chronic illness in remission. At a later date, around the age of seventeen, I remained on infusions and a second drug called Tioguanine. I continued this treatment until I was eighteen. This is where my university experience began.
Some of us with Crohns are lucky enough to be treated by a series of consultants that care and really do consider the stage you are at in life and the kind of treatment you need. Whilst in my first year at university, I was venturing home every eight weeks to have routine infusions, blood tests and appointments at the hospital. Understandably, this meant time management at university was essential. After all, I can’t be in two places at the same time. I learnt to meet the deadlines well in advance, in case of any flare-ups but was adamant to have the ‘uni experience’.

Just because you have a chronic illness does not mean you must be a ‘outsider’. I joined a couple societies on campus and went ‘out out’. Obviously testing the water, learning what your body can handle and learning when it says “enough is enough mate”. First term went by glitch free. Second term, however was not so easy. I had a flare-up around mid-term and was brought home for a week to recover. This said I was still meeting deadlines and finished the year with a first. In the summer holidays, my consultant posed that I switch to self-administered injections every two weeks. This way I could stay at university, free from hospital commitments. I decided (at the time quite reluctantly) to have the injections and remain taking Tioguanine (a drug commonly given to Leukaemia patients, but used as a top-up medication in my case).

So far, it’s been the right decision, any flare-ups have been minor and tend to last a maximum of three days.

Learning to live with a chronic illness at university is something that is hard to describe or prescribe. There’s so much variability in people’s conditions and some don’t find the right medication (or, what would be the ‘right’ medication, just doesn’t work). I have been lucky enough to have the support and knowledge of relatives and consultants. My advice for those venturing away to university, is to remember, universities recognise Crohns as a long-standing health condition and in some cases, will allow for inclusive learning plans to be made. Support and Well-being services aren’t there to judge you, they will help. Don’t let what is labelled as a disease limit your freedom.

Lastly, although there are a range of support networks, they don’t control the way you live. So, stay healthy, make sure you take (prescribed) medication and don’t try and keep up with the ‘pack’ to keep up appearances. Your health is more important.

Daisy’s Story

Now it’s my turn, to discuss where it all started for me and where has it led me to; both of which are total different paths to Tom.

Just because we’ve got similar diseases, nobody is the same. I was diagnosed with Ulcerative Colitis at the age of sixteen and with symptoms cropping up before/ during and after my GCSE examinations. When I received my eventual diagnosis (something neither my family nor I had heard of unlike Tom) it came as quite a shock. The doctors informed me that I would lead a normal life, but take long term mediation and not be able to smoke or drink (the latter two not being any real loss to me).

Contrary to Tom, my medical history is different. Tom’s medical history is a little bit more detailed, diverse and more drug related than mine. From the early days I was prescribed Pentasa amongst other medications including steroids. All of which eventually made a difference. Needless to say, they weren’t and aren’t the sole cause of my remission (to this day).

Following my diagnosis and prescription of way too many drugs, for a girl of 16, managing for the rest of her life, my mum started to do some extensive research surrounding IBD the causes/ the cures.

To our discovery, there was a particular diet branded, SCD, Specific Carbohydrate Diet which is advised for those with chronic conditions. It is free of grain, sugar, starch/carbs and generally anything processed. What can you eat? I hear you cry. To this day, the SCD diet has served me well and is the main factor, besides my mum’s support that has kept my symptoms at bay. My mum has investigated so much that if it wasn’t for her finding this diet, I honestly don’t know where I’d be.

Initially, keeping to the diet was tough, I felt like all the food I loved had been taken away and it was awful. I wasn’t sure how I would ever cope. However, over time your mind-set changes and you start to adapt to what you can and can’t eat. To be honest, now it’s just accepted as part of my everyday life.

Just like people that attend the gym and follow a strict meal regime, they’re allowed cheat days. The same goes for me, I treat myself to some bread or chocolate. Everything in moderation. Most of my family and friends are aware what’s good and what’s not so good, meaning wherever I go there’s something for me to munch on.

I have found when I’m stressed is when I’m affected the most and so when I embarked on my University of Kent experience this was somewhat daunting. I honestly never thought I’d manage cooking the right stuff or stress levels. I also thought how hard it would be to resist the bad stuff as no one would know about my illness. However, I managed it.

Year-abroad adventures!

I’m in my third year and on my Year abroad. I have become accustomed to meeting deadlines in advance to reduce my stress and risk of a flare-up. I learnt to cook and even manage to keep myself healthy and free from food I should avoid. My university friends soon started to understand what I should and shouldn’t be eating and are so supportive and considerate.

There’s no denying that university is stressful, for anyone, but just because you have chronic illness (or any other illness) does not, and should not stop you fulfilling what you want to achieve.

The university wellbeing service and the campus doctor have both been amazing in helping me. Universities do recognise chronic illness’ and encourage you to make inclusive learning-plans. They have taken a lot of pressure off the exam seasons etc. I also now have my own specialist in the local hospital as the uni doctor thought it would be beneficial for me as, until then no one had suggested I see a consultant and I was only under my home GP.

Learning to manage a chronic illness at university or in any aspect of life is a challenge. I have been very lucky with the support of my family, friends and doctors. I was also lucky to meet Tom and we consider ourselves ‘pooping pals’. I still remember to this day when we found out. It did help knowing there was someone else out there (never met anyone prior to this) that had been through what I had. However, it isn’t essential, people can still understand even without the illness themselves. Never let people think they know best ‘it’ll be fine if you drink a few more’ etc. I was lucky to find the right group of friends and feel comfortable with my choice.

Now, I’m seeing more and more people being diagnosed with IBD and thankfully, there’s a lot more support and awareness than ever before.
We’re in this together, don’t you forget it!