It Takes Guts - My Life With Crohn's Disease

IT TAKES

GUTS

My Life With

Crohn’s Disease

by

Rachel Callaghan

Diagnosed with Crohn’s aged 13

Introduction Hey, my name’s Rachel. I’m 21 years old and I’m from Galashiels in the Scottish Borders. At the age of 13, after a lengthy hospital stay, I was diagnosed with Crohn’s Disease in 2008.

I started this project with Fixers to raise awareness of Crohn’s and give a voice to those who don’t have one because I know what it’s like living with this illness and how alone you can feel.

More and more people are being diagnosed with Crohn’s each year* but I still feel like noone is talking about it, and there is a stigma attached to having this illness.

I’ve known people to make all sorts of false assumptions about Chron’s and I want to raise awareness of the realities of living with the condition to dispel some of the myths.

That way, I hope, others won’t have to go through what I have been through.

I also want to show other people with Crohn’s they are not alone and there is nothing to be embarrassed about having this condition. *see stats & facts inside This leaflet should not be relied upon or substitute for formal medical or other advice.

Living with Crohn’s It took me a long time to get diagnosed with Crohn’s. When I first went to the doctors I was suffering from vomiting, diarrhoea, bleeding and extreme tiredness but because of my age I felt like I wasn’t taken seriously. Because I looked so well on the outside people found it hard to understand just how ill I was. As it was left for so long I was eventually rushed to an Intensive Care Unit more than 40 miles away from home where, at the age of 13, I started a fight for my life.

Living with Crohn’s is hard. It’s the last thing you think about before you go to sleep and the first thing when you wake up. You have to plan everything in fine detail and be on the ball with all your medication. You also need to learn to adapt to what your ‘new normal’ is going to be. You need to self-manage your medication and injections which for me involves taking 40-50 tablets a day and doing up to three injections. I also do a weekly injection of a strong drug which is intended to lower my immune system enough to stop it attacking my digestive track. It causes a number of side effects such as being sick a lot, hair loss, lung and liver problems and insomnia.

When I spend long periods in the hospital one of my parents is always with me and the other is at home looking after my brother and sister, which can sometimes split the family up for months at a time. So it doesn’t just affect me but also my family. Friends also tend to forget about you when you’re ill all the time. Slowly the phone calls and visits start to stop and before you know it you’re lucky if you’re seeing someone/talking to someone once a fortnight.

Having Crohn’s made me very independent from a young age because you need to grow up fast. However, it has also opened so many doors and opportunities for me: in 2014 I won Inspirational Youth of the Year* because of the charity work and awareness raising I’ve done about this illness. * scotborders.gov.uk/news/article/755/borders_youth_awards

What is Crohn’s Disease?

This is how I explain Crohn’s to people for the first time: Crohn’s disease is a chronic illness for which there is currently no cure. It’s an inflammation of the digestive track (from your mouth all the way down to your bum!) caused by your immune system attacking it... and as a result it can become very swollen, inflamed, ulcerated and painful. Crohn’s can also affect other parts of your body too.

common symptoms

nhs definition

diarrhoea

‘Crohn’s disease is a longterm condition that causes inflammation of the lining of the digestive system.

swollen joints

abdominal pain

mouth ulcers

blood and mucus in your faeces (stools)

eye, skin and liver problems

dramatic weight loss

fatigue (extreme tiredness)

Stats & Facts

Inflammation can affect any part of the digestive system, from the mouth to the back passage, but most commonly occurs in the last section of the small intestine (ileum) or the large intestine (colon).’ nhs.uk/conditions/crohns-disease/

crohnsandcolitis.org.uk

At least 300,000 people in the UK have been diagnosed Every 30 minutes someone in the UK is diagnosed with Crohn’s Disease or Ulcerative Colitis – the two main forms of Inflammatory Bowel Disease (IBD).

1 in 4 people newly diagnosed are under 16

IBD is unpredictable, lifelong and potentially life-threatening

Treatments can include; diet, medication, and surgery Possible causes are genetic, environmental and an abnormal reaction of the immune system to bacteria in the gut.

MENTAL HEALTH Crohn’s can affect your mental health just as much as your physical health. From experience they go hand in hand. I became isolated because I was ill, which then caused depression. When I finally left the house I developed anxiety because I’d been so isolated. For many, like me, it became a vicious cycle which becomes hard to break.

I found this infographic online and it sums up how I feel on the inside!

THE PIRANHAS These vicious fishes are ever vigilant and when aggravated, they gnaw relentlessly at anything within reach.

ISOLATION

DEPRESSION

ANXIETY

THE STAMPEDE Without a moment’s notice, the herd launches into a frenzy. All thought is obliterated and replaced with the singular, consuming need for a prolonged visit to the nearest porcelain lounge.

THE PRICKLY PEAR It is in no rush and is quite content with scratching and plodding its way through the bowels, making sure to leave behind stinging sensations as a parting gift.

THE FIRE Flames can flare up or they can simmer at a constant, low burn. Regardless of the size of the inferno, the burn angers readily.

THE SINKER This dense mass swells and weighs heavily in the depths of the bowels.

THE VICE Once it’s teeth are dug in, it refuses to let up. The fangs stab and squeeze tightly without remorse— sometimes for hours on end.

With thanks to Infographic Designer, Illustrator - B. R. Keller / beeraekay.com Copywriter - Wyatt Hudson Hall

Myth busting!

There are plenty of myths and rumours around! So here are some hard facts…

Crohn’s is nothing like IBS! (Irritable Bowel Syndrome)

nhs.uk/Conditions/irritable-bowel-syndrome/

Stomas (colostomy bag) now are very small and discrete and despite what others think you can’t smell it or see it under clothes. nhs.uk/Conditions/Colostomy/

It’s not contagious at all; you can’t catch Crohn’s off someone.

nhs.uk/Conditions/Crohns-disease/Pages/Causes.aspx

Just because you have Crohn’s doesn’t mean you are not capable of working and achieving your goals in life despite being ill.

positive messages My outlook on life is a positive one. I feel like you can do anything you set out to do. It might not be the easiest path to take but you can find your own way around it and achieve whatever it is you can. After all, if you don’t laugh then you’ll cry!

You need to try to make the best out of a bad situation.

I would like others with Crohn’s to know that they should never feel alone. There is always someone else going through what you are. Don’t feel embarrassed about having or talking about Crohn’s. You have this illness for the rest of your life and you have every right to talk about it without feeling ashamed. There is always light at the end of the tunnel, just sometimes it takes a bit longer to get through to the other side.

My message to people who are new to Crohn’s is… please try to understand that even though we look well, it doesn’t mean we are well and that it is a serious condition. Also remember we are more than our illnesses.

We are people (at the end of the day) who still want to have friendships and a social life, just like everyone else. And don’t be afraid to ask questions about the illness. We much prefer you asking to you just presuming!

Try to be more open and understanding to those who suffer. If you were in my position think how you would want others to treat you.

- Rachel

For Information and Support crohnsandcolitis.org.uk curecrohnscolitis.org ccfa.org

CREDITS a project by RACHEL CALLAGHAN

project coordinator TOM WHALLEY

infographic B. R. KELLER beeraekay.com WYATT HUDSON HALL

produced by LEE SCOTT

For more information about this leaflet, and to view or download it online visit:

fixers.org.uk/crohnsdisease Fixers is a campaign that helps young people ‘use their past to fix the future’ and is part-funded by the National Lottery through the Big Lottery Fund.

FixersUK

fixers.org.uk

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