Hi, my name is Lizzie! I’m 19 years old, and heading to Lincoln University in September. I have been diagnosed with Crohn’s Disease (a form of Inflammatory Bowel Disease, IBD for short) for 6 years, since I was 13.
It all started with a few ulcers at the side of my mouth. However, both my family and I excused this for having braces at the time. I then developed large lumps down my legs - this was called ‘Erythema Nodosum’. Again, we excused this for sporting injuries, as well as just general clumsiness. The main symptom which triggered investigation was diarrhoea. As embarrassing as it sounds, I had this for over a year. I have always had a weak stomach since being a toddler, therefore, never thought of the severity of this.
My mum insisted I had a blood test as other symptoms started surfacing. The results came back negative, which I thought was brilliant as I was never a fan of hospitals or needles. As I was young, I never questioned this, instead I accepted that this abnormal daily occurrence of rushing to the toilet 20+ times a day was now reality. This was until some weeks later, I was rushed to hospital from my secondary school, nurses saying I was “severely malnourished”. This was the start to a long journey and much needed recovery!
When I first went into the hospital, I weighed a shocking 27kg! Which in perspective is the equivalent to 3 watermelons. This was the start of a long recovery process.
Lizzie
Living with Crohn's Disease
I was put on a list of medications. One of which was steroids. I was often made fun of, pointed at, and named called, such as “chipmunk.” This was because of my face looking rather spherical due to water retention (a common side effect of steroids).
I also had a feeding tube for 3 months, meaning all I could eat was a few hard boiled sweets a day, and kendal mint cake. The rest of my diet was liquids - they were fed to me via a machine. Watching others around me eat ‘normal’ food was definitely a rocky time. After the 3 months went by, I tried even more medications, none of those agreed with me, apart from the one I am on currently - it's called ‘Adalimumab’ and I take this through self injections.
For those unaware of what Crohn's Disease is, it brings a lot of urgent dashes to the toilet! A lot of the pains, weird nauseous sensations, and fatigue, does make some days significantly more draining than others, therefore I have to accept that I may miss out on activities i.e. with friends and family.
I used to feel very guilty for this, however, I have learned to accept that days like this will come and go, and it’s completely normal when living with my Crohn’s Disease. Knowing and understanding what my body needs after a flare-up helps the recovery after those bad days. I usually sleep lots the next day, and fuel up on food. This is one thing I will be taking into university as I am prepared to accept there are times when pains are unbearable, I will be unable to write, or unable to attend a lecture.
On the bright side, I applied for DSA recently and have fortunately been eligible for extra resources and websites to help ease any stress that I could face. I also have a wellbeing mentor in place when I join which I would definitely advise if you are planning on joining University. Just remember that University comes with a lot more freedom :)
In terms of Freshers at University, I am anxious about possible pressure of drinking alcohol, as with this condition, it can trigger symptoms. However, I am most looking forward to meeting a network of people who are passionate in the same course as I am, and for University itself. I am excited about having my own en-suite!!
If I could give one piece of advice, it would be building a network (big or small) of people also living with the same condition as you. This could be by joining online virtual zoom calls whereby you can talk to others about similar experiences and different coping methods; this gave me heaps of reassurance, and brought back a sense of normality, which years ago I wouldn't have thought was possible. It is an invisible disease, and does not define who you are.
Having a chronic condition like Crohn’s is all about accepting. I’ve used this word many times before because it’s true. Some days are much less predictable than others, but that is out of our control. I have certain hobbies that I use to distract myself, for example, simple drawing. My mind is completely away from what is happening in my stomach, but more concentrated on my drawing.
Currently, my Crohn’s has never been better. I am now in remission, and have injection pens which I do at home. These have worked absolute miracles. I don't experience flare-ups as frequently as before which is awesome! I still have to be careful with my lifestyle, including diet, as some foods aggravate my gut, but overall, I am grateful and happy to experience what it feels to live a normal, healthy life. On top of this, an exciting opportunity I have been given is that I am part of two research projects which aim to discover more about my condition.
Are you a University student living with Crohn's or Colitis?
Why not check out our 'Freshers Checklist' created by another one of our supporters - Emily. She shares her top tips for managing IBD if you are starting college or university.
