From the word go I always suffered with my bowels as a child.
Often hanging round toilets in school, my mum worried about me – but it wasn’t until I got to secondary school that I started to get really poorly.
One day I plucked up the courage to tell mum about the pain I had been experiencing on my bottom to which she took a look and was horrified at what she saw. I had a huge open ulcer about 7cm wide spread across my bottom and up my bumcheek. I could barely walk as it would rub against the other and I was in so much pain.
School was a nightmare, the teachers made me do P.E and I had to hide my pain and fight back the tears, mum marched me to the doctors and that’s where all the tests began. I was referred to the hospital where I was given my diagnosis of perianal Crohn’s disease, which meant I had Chrohn’s around the anus.
I was first put on a liquid diet called modulen for 6 months. It was the most miserable time of my life, I missed food so much.
My 11th birthday was spent at the cinema sipping on this disgusting drink. I became severely depressed as the stuff wasn’t even working.
I was then referred back to the hospital where I was given a colonoscopy. The doctors who performed it were stunned by what my back passage looked like and after I had the colonoscopy they told me I would have to stay in and be admitted. I hated it.
I was diagnosed with Crohn’s in my bowels then too. It was then that I was started on my miracle drug infliximab. This infusion healed up my perianal crohns and I was so so happy. It took a while but I carried on my life, I even went skiing with the school in year 8. My doctors said that I wasn’t go to because of the massive ulcer on my bottom, but I refused to let it stop me.
Although it was painful and I had the ordeal of dealing with nasty teenage girls who thought it would be funny to take pictures of me when I was crying in pain on the toilet. I tried my best to enjoy myself, I spent 8 years on infliximab, it worked most of the time for me, but school was hard.
I remember one time I really needed the toilet in class, I was almost in tears, but my teacher wouldn’t let me go for ages. On the way to the toilet I soiled myself. I sat in the cubicle breaking down not knowing what to do. Luckily I had brought my phone with me to text my mum, and she had to bring me clean clothes to the school and console me, but it was mentally destroying.
I spent most of my time back and forth to the nurses office, I missed ALOT of school, I was so uninterested in learning, and I was too ill most of the time. School and my teenage years were generally a really hard time.
I had no confidence around boys due to everything I had been through, and because of that I was called ‘frigid’ a lot. All my friends were experimenting with boys and I was the outcast who sat back and pretended it didn’t bother me that I wasn’t a normal, pretty outgoing teenage girl who got male attention.
At the end of 2014 I started to feel the effects of infliximab wearing off. I was in a lot of pain and was struggling at work. My stomach kept bloating, I was tired constantly and genuinely really miserable!
I was admitted into hospital in January 2015 which begun my 3 month stay. 2 weeks after being in on antibiotics and steroids I woke one morning with a 42 degree temperature and I felt SO unwell. I was given an emergency MRI scan which revealed I had an abscess in my bowel and the surgical team were sent to tell me I needed an emergency operation that evening.
I had never been so terrified in all my life.
My family gathered round me telling me everything would be okay, but I know they were just as scared as me. The surgeons said they didn’t know if I’d wake up with a stoma, and that I needed to be prepared for it if so. This was the one thing I didn’t want.
I woke from the operation and my first drugged up words when I opened my eyes and saw a nurse were: ‘Do I have a stoma?’
She said so sweetly ‘No darling’. I had never been so relieved. This wasn’t the end of it though.
I was very poorly during my recovery. I was put on TPN intravenous nutrition into my neck, not allowed to eat for 3 weeks, had to have a drain fitted into my stomach to drain off a huge pocket of infection in my abdomen, which was attached to me for a month.
A month after my operation my scar decided to split open. I had the pain of having to have my scar packed everyday and watch it heal from the inside up.. I hated it!
I lost so much muscle mass and weight in hospital it was a struggle to learn to climb stairs and walk far again, but I got home and built up my strength.
I thought my ordeal was over for a while but no. August 2015 I was told I have a fistula in my bowel – this is an abnormal tunnel from the bowel to skin, and it means I have a small hole on my belly that won’t heal.
I have to wear a bag over it because it is draining infection from the fistula constantly. I am now told the only way to get rid of this is to have another large operation to cut it out. I will then be given a temporary ileostomy for my bowel to recover.
This isn’t booked in anytime soon but I’ll be prepared.
Life with Crohn’s is hard. It’s not just the bowel problems – it’s everything else you don’t see.
I suffer badly with oesophageal crohns which is ulcers all in my throat and down the oesophagus. It’s so painful and I’m constantly on steroids to try to bring the pain down until I am started on my new medication which will hopefully treat my bowel and throat inflammation.
People think that because you smile and look well on the outside you can’t possibly be as sick as you make out, but that’s what we have to do, we try and be normal and act pain free because that’s all we really want.
Nobody knows I wake up every morning and have to take painkillers straight away aswell as throughout the day.
Every day is a fight to try to stay healthy and find a suitable job and bring some normality to my life. But my worst fear is never being good enough to find love.
I worry I’ll be judged and nobody will ever accept me, my illness or my scarred body.. who could love someone who is so broken physically and mentally?
Despite all of this I’ll always paint a smile on and carry on because that’s the person I am.
Yes, I have Crohn’s disease… but it doesn’t have me.
Words by Chloe Chantelle Meade