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By Emma Illingworth (she/her)
Since being a young girl, I never felt quite right; I could never put my finger on what was making me feel so poorly. At the age of 12/13 I started going to the doctors more and more frequently: puberty, period pain, IBS, possible appendicitis, haemorrhoids and indigestion are a few of the diagnosis’ I went through over the following 5 years. It wasn’t until one day, I turned up at the doctors and said I really need help, there was blood in my stools and I was always in pain that the doctor threatened me with “Well, if you are going to keep complaining, then we will just send you for a colonoscopy!” My response “Please”.
So, off to hospital I went and during the colonoscopy the doctor pointed out, matter of fact, that I had Crohn’s Disease.
What Is Crohn’s Disease?
The big question, I didn’t even fully understand what I had for a long time. To put things simply Crohn’s Disease is an Inflammatory Bowel Disease which can affect any part of the digestive tract between the mouth and the anus, but more often than not, is located in the small intestine. Mine is in the terminal ileum, the distal end of the small intestine, that intersects with the large intestine. Crohn’s is also an incurable and chronic condition that can never be rectified, there are periods of ‘remission’ however, it will never go.
Crohn’s is also known as an autoimmune disease, that means in layman’s terms that your immune system is effectively attacking itself because it is too good (in my translation, that means people with autoimmune diseases are actually super-heroes). Your gut contains good and bad bacteria and the immune response to bad bacteria is to destroy it; a super-efficient immune system means that it destroys the good bacteria too and causes inflammation, ulcers, pain and other unpleasant symptoms.
There is no specific cause of Crohn’s disease, it is merely triggered mostly. I am uncertain as to whether you are born with it, no research is conclusive enough, but there is evidence that it can be genetic.
Symptoms of Crohn’s Disease
The list for this is very long and not the same for each individual sufferer. Autoimmune disease is different in everyone who is affected and so there are multiple different brackets of severity and regularity of symptoms. The main symptoms are:
Frequent diarrhoea
Rectal bleeding
Blood in stools
Unexplained weight loss
Vitamin deficiencies
Abdominal pain and cramping
Reduced appetite
Fatigue
Joint pain
Brain fog
Disrupted sleeping
There are even more! It is a horrible disease which affects every part of you, not fun.
Treatment and Medication
The first line of treatment tends to be steroids and for Crohn’s drugs called Pentasa, Azathioprine (Aza) or Mercaptopurine (6mp). I started on Pentasa granules, you had to pour them into your mouth, it was bizarre; then I went on the steroid Budesonide. Originally, this should have been a 3-month course, however due to miscommunication from my doctors, I was on them for over 9 months. Steroids were, and still are, my worst nightmare. They changed me, I put on so much weight because my appetite was insatiable and the only food my stomach could cope with was unhealthy food, so the pounds PILED on. My mood also became erratic, I was angry all of the time, shouting and snapping at the smallest of things, I was grumpy and sad… just not EMMA, happy and smiley Emma.
After the steroids I started Azathioprine, an immunosuppressant (a drug that kills your immune system so that it cannot attack itself) and I was okay on these for around two weeks then the side effects kicked in: sickness, stomach pain, headache, temperature, back and joint pain, anxiety. It was the worst experience I had had in my life, I genuinely thought I was going to die. I came off of them and went back to clinic, where they suggested 6mp. It is technically the same drug, just in a more broken-down form so it is easier for your body to deal with; one tablet, that is all I took, and I had sickness, temperature and hallucinations. I thought there were doctors in my bedroom stabbing me, to this day I can remember how it felt, I was traumatised. Safe to say, I have never and will never go near those drugs again.
The next step are biologic drugs, these are manufactured within a living micro-organism such as plant/animal cells, or most commonly artificially created DNA. I am on a medication called Infliximab, which I go to hospital for every 8 weeks and have it via intravenous infusion (basically straight into the vein via a stab and tube or cannula, as my mother corrected when proof-reading this). It is an Anti-TNF which binds to the chemical messenger TNF-alpha (a key part in the autoimmune reaction). The infliximab stops the TNF-alpha binding to the receptor in its cell, stopping it from working; so similarly to Aza and 6mp, it is stopping the immune system from working properly so that you don’t have an internal war.
I have been on Infliximab now for 4 years (30 infusions!) and it is working well for me. When I first started, my skin came up in psoriasis all over which was incredibly irritating but as a result the nurses prescribe a steroid Hydrocortisone and antihistamine Piriton. These control the reaction and mean I can stay on this for as long as possible. I am hopeful one day I will be able to come off this medication, however once I do, I can never go back onto it which is something I am not ready for yet.
Chronic Illness and Mental Health
The effect of Crohn’s disease, alongside any chronic illness, surpasses just physical health. A large number of sufferers struggle mentally too, me included. As I was diagnosed at 17 with a bowel disease, that is incurable, I lost all confidence within myself and was too ashamed to tell anyone what was going on with me. I became so isolated and depressed. My stress levels were through the roof as I was about to take my AS Level exams AND I was putting on weight.
I had always had the usual body-image woes, like most people, but the weight gain from my steroids meant that everything I had worried about before catalysed before my eyes. This was the start of a long, hard battle with the eating disorder Bulimia Nervosa.
For the past four years, alongside bulimia, I suffered greatly with depression to the point that I had to attend Cognitive Behavioural Therapy, spend a year with The Yorkshire Centre For Eating Disorders and begin anti-depressants which I have been on for nearly two years now.
I think people misunderstand just how chronic illness can affect you mentally, it completely changes your life and everything you do. You lose friends, because you appear flaky when you cancel all the time. You have to give up certain parts of your life, change your diet, adapt your work-life, manage being poorly every single day without feeling like a burden.
Crohn’s Disease has disrupted all plans I had for my future. I had to leave university because I was too sick to manage, I became isolated because it was easier to have no friends than to disappoint people, I had to leave 2 jobs because the people around me didn’t understand my condition.
However, having Crohn’s Disease has introduced me to the most amazing and inspiring people, it has renewed my passion for writing and creating awareness and it lead me onto the path that created my music tuition business which I won ‘Young Business Owner of The Year Award’ at the British Business Awards 2019.
Every cloud has a silver lining, and everything that happens to you makes you a stronger person.
IBD stands for Inflammatory Bowel Disease.
IBD stands for Incredible, Brave and Determined.
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For more information on Crohn’s Disease/Ulcerative Colitis visit:- https://www.crohnsandcolitis.org.uk/
Emma also runs a blog where she talks more about living with Crohn's- , http://www.quitesimplyemma.co.uk/about.html, check it out!
(Originally published 3/1/20)