Invisible Illnesses – Charlie’s Story – Crohn’s Disease * some readers may find images disturbing*


Every Friday I will be highlighting an invisible illness, we all know they exist but exactly how much do we know about these conditions and the people that suffer from them? I myself have an invisible condition and it is very easy for people to assume that because I look OK and I walk,talk and act OK that I am fine when quite often this is far from the truth.

Last week I spoke to Ar about what life was like living with narcolepsy, This week I talk to Charlie who has been through so much at such a young age and suffers from Crohn’s Disease.

Please could you introduce yourself, tell us a little bit about yourself. What you enjoy doing.

I’m Charlie. I am a mom of 3, 2 boys and a girl. A step mom to one and nan to a little girl. I’m a palliative care nurse and a wifey.

What is your invisible illness?

I suffer with Crohn’s disease

When did you first notice your symptoms?

I first had symptoms from around the age  of 13  and they intensified the older I got.

What was it like getting diagnosed?

Sadly I was only diagnosed when I presented to A&E with sepsis, I had an operation called a right hemicolectomy which showed heavily diseased bowel. They removed a large section of small and large bowel then joined them together. Sadly the join perforated in 5 days and once again I had sepsis.

I had another open abdominal surgery where an ileostomy formed then a huge abdominal fistula. I spent 5 days in HDU and 14 weeks in hospital. I was commenced on crohn’s infusions


How does it affect your day to day life?

I have sadly lost my job and my whole life has changed. I am no longer able to enjoy what I did before & suffer crippling fatigue, bad tummy, sore bones and joints. Those have impacted on me being able to work or enjoy many things I did before.

Do people treat you differently because of your illness?

I find people arent well advised about crohn’s and so believe my disease is just toilet related and therefore people
Cant understand why I feel so bad all the time, that in turn helps me to loose friendships etc

What advice would you give to somebody else suffering from your condition or perhaps to somebody who may have symptoms?

I would advise anyone suffering from symptoms of crohn’s to push and push their GP for testing and scans etc before it becomes life or death as it did in my case. Do not be afraid to pester and beg. It could save your life.

Do you know of any good groups or organisations of support for people with your illness?

Purple wings charity & Crohn’s and colitis uk are fantastic sources of support and financial assistance to sufferers.

What are your goals for the future?

My goal is to get into remission and return
To work properly! And to manage a night out and a boogie like I used to love.
Wow! Thank you Charlie for sharing your incredible story and journey with us. I don’t think many of us can begin to imagine how scary that must have been for you but for plenty of other people out there your story will be so similar to their own and they will take great comfort in knowing that they are not alone.

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