My horrifying experience with Crohn’s disease proves it isn’t just a ‘toilet disease’

From what I can remember it all started in October 2013.

At the end of September I had started to feel slightly unwell – but I didn’t think anything of it as I’d been to Cannock Chase and completed the Go Ape treetop challenge.

Fast forward a month and I could hardly walk around due to pains in my abdomen. I was tired and my appetite had started to decrease.

I can’t remember a lot between then and when I was first admitted to hospital other than lots of doctors trips where I was told the pains were all in my head, that I wasn’t eating because I didn’t want to and that I wasn’t ill, I just ‘had anorexia’.

All I wanted was for someone to listen. Why were the people that are supposed to help you the most, the ones that were failing me?

My admission was great timing, it was my 18th birthday. I was told I had appendicitis and was given IV antibiotics.

A week went by and I can’t say I felt any different but I was discharged nonetheless.

The next month was full of more doctors visits which led to my second hospital admission. My heart rate and inflammation levels were through the roof.

In the few months that had passed I had developed a lump. It was only pea sized at first but now it had grown and you could see it physically sticking out of my abdomen. It was painful to touch.

I had an ultrasound as they were worried it was my ovaries but all was clear. I then had an MRI scan that confirmed I had a mass growing in my bowel area but they couldn’t say what it was.

‘It’s not Crohn’s’ the Gastro team told me. Apparently it couldn’t be because I wasn’t running the toilet all the time and didn’t have the ‘typical’ signs.

I was left overnight and when I woke the next morning I was screaming in pain. I was injected with morphine and a surgeon came to see me and said I’d be having emergency surgery that afternoon.

Surgery? I was 18, I had never been ill in my life and now I was lying in a hospital bed preparing myself to be cut open.

Most of the next 2 weeks was a blur. I was so high on drugs I didn’t even know what had happened or if the surgery has been a success.

I later found out my bowel had burst, hence the pain I was in that morning.

I’d been cut straight down my stomach, had part of my bowel removed, my appendix taken out and a stoma formed.

A biopsy was taken and it was then confirmed ┬áthat I had in fact been suffering with Crohn’s Disease.

I couldn’t take it in. Just 6 months ago I was, what I thought, a healthy, confident teenage girl. Now I was 4 stone 13lbs and I’d got this bag attached to me.

I cried for days. Why me? That’s all I ever thought.

I had a central line in my neck to feed me as I continued to lose weight. When they took it out I had what can only be described as a panic attack times by 100.

I couldn’t breathe, I was terrified. I remember holding my dad’s hand and begging him not to leave me. He thought I was going to die.

I was given oxygen overnight and from then on I suddenly started to feel better. After what seemed like months, I was discharged and I honestly felt the best I had in a long time.

I was eating everything and anything and soon enough I became comfortable with my bag.

Despite accepting my bag and being grateful for it saving my life, I decided to have the reversal 8-9 months later after I had another scan that confirmed my Crohn’s was no longer active. I was so excited.

But little did I know what was yet to come.

My reversal went really well and I was discharged within 4 days. I thought that was the end of it and that I could now get on with my life.

A few days later I was in the worst pain I’d ever felt in my life. Actually scrap that, that kind of pain comes later on but at the time it was pretty bad.

I couldn’t walk and my wounds had started to leak. After ringing 111 and not having much luck we went straight to A&E.

To this day, I still dread to think what would have happened if I hadn’t.

I was in A&E for about 8 hours, my gown was soaked through from my wounds and my veins had all collapsed.

I was put onto a ward and a man came over to pull out some of the staples in my stomach and it was like the flood gates had opened. My wounds just poured out.

I shouted out in pain.

He proceeded to scrape out my open wounds to get all the infected pus out. I screamed and cried for him to stop. He didn’t say a word, I thought I was going to pass out.

THIS was the worst pain I’d ever felt.

My wounds had to be packed. Something that carried on for months afterwards until they healed.

I remember seeing my stomach for the first time. These gaping holes where neat little scars had once been. Holes that, despite me thinking were the end of the world, I never imagined would heal so quickly.

The body really is an amazing thing.

I found out that due to the infection in my wounds I had also contracted sepsis, a life-threatening condition. I couldn’t believe it.

I’d already been handed one disease and now I’d had to battle something else on top. Thankfully after a lot of antibiotics I was home a week later, just in time for Christmas.

The next few months were good. I still felt like I was in remission but I started to develop a lot of mouth ulcers. These got worse and I started to feel unwell again.

By September 2015 I was put on steroids.

I was left to deteriorate again for months. This time my symptoms were more stereotypical which meant I couldn’t leave the house.

I had more tests which confirmed I had bile salt malabsorption and also oral Crohn’s.

I also had to endure a colonoscopy which has left me traumatised.

I had three members of staff around me, one putting a tube up my nose, one putting one down my throat and one trying to put a camera up my bum, which was very ulcerated.

After 5 minutes of kicking and screaming, the procedure was abandoned, but it did confirm my Crohn’s was flaring again.

I am now taking Humira injections to try and stabilise the inflammation in my bowel but I am also waiting to start treatment for my oral Crohn’s.

Inflammatory bowel disease isn’t what everyone deems it to be.

It’s enduring tests, surgery, medication, as well as going hand in hand with a lot of other conditions.

It’s not just about going to the toilet. It’s a hell of a lot more.

Words by Natalie Bamford

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