Billie's Story

No one prepares you for being sick your whole life. You have to work it out on your own. That’s what I had to do aged 20.

I’m Billie, I’m 23, from the UK and three years ago my life was turned upside down. Summer 2016, I’d just finished my first year at university and was supposed to be having the summer of a lifetime, but I started to notice something wasn’t right. I was tired and bloated all the time; it didn’t take long until I noticed blood in my stool. I panicked and turned to Dr. Google, which only made things worse, so I chose to ignore it. I was 19, I couldn’t be sick. It would just go away, right? Wrong.

This went on for a month or so, until I plucked up the courage to see a real doctor, but instead of calming my fears, she made them worse. Without a single test, she look at me unmoved and unemotional and said, “I think you’ve got bowel cancer.” A few weeks later I was sent for a colonoscopy, to find out what was wrong. After the scope the gastroenterologist told me, he couldn’t find anything wrong with me…

I held onto the fact they couldn’t find anything and went back to university for my second year. Within two months I was bed bound; crawling to the toilet 20+ times a day. I’d lost over two stone in a matter of weeks, I couldn’t sleep or eat. My skin was grey and my body was exhausted. After trying to pretend I was fine, my dad dragged me to A&E; the harsh lights hurt my head and the hundreds of people rushing about made me feel nauseous and anxious. After five hours, the A&E doctor handed me iron tablets and told me I probably had an iron deficiency due to my menstrual cycle, but to see a gastro specialist just in case.

I don’t remember the first appointment with my second gastroenterologist. I hadn’t slept or eaten properly for three months. He took one look at my grey skin, lifeless eyes and resting heart rate of over 150bpm and got me in for tests. A week later I was diagnosed with ulcerative colitis. At the time it meant nothing - I was just happy my pain had a name - because if it had a name, it had a cure, right? Wrong.

Ulcerative colitis is an autoimmune condition, where the immune system cannot tell the difference between the good or bad cells in the lining of the large intestine; so it just attacks them all. It causes ulcers and bleeding. A nurse once told me: “your colon looks like it’s been badly sunburnt and dragged across a pavement for good measure.” It’s also incurable. I was started on cocktail of very strong medication to try and get the civil war under control. My face started to grow, acne popped up across my cheeks and made my face burn. My hair fell out and my joints swelled. I was taking 30+ pills everyday and going in for intravenous therapy once a month, but I was still suffering with diarrhoea and blood in my stool. I was pushing myself to the limit. As well as going through all this, I was determined to finish my second year of university. I wrote papers in hospital and got my friends to hand them in for me. I did the whole year either attached to an IV in hospital or in the confines of my flat; too scared to be more than two feet from a toilet.

 Three months into my third year at university and 11 months of treatment, I was sat opposite my gastro specialist for the millionth time, but this was different. My health had declined even more and deep down I knew what was coming. “You can’t try any more medication, we need to resort to surgery.” I pleaded with him one more time and asked if I could just finish my degree. I’d managed to crawl my way through the second year, so I thought I could handle another five months. “You won’t make it that long if we don’t get that colon out. Now,” he said. So I pressed pause on my life, left university and packed for surgery. I spent Christmas 2017 and the first days of 2018 in hospital. Almost one year to the day of my diagnosis, I had all 5ft of my colon removed and a stoma bag fitted. To put it simply, I poo into a bag on my stomach. Happy New Year to me!

It’s been two and a half years since my surgery and even though it hasn’t been plain sailing, my stoma has given me my life back! The side effects of the medication started to ware off - my hair grew back and I started to fill in between the bones. I got stronger and more confident, knowing I wouldn’t have to be chained to a bathroom any more. Six months after my operation I flew to Ibiza for the girls holiday of a lifetime. After that, I went back to university and had way too much fun in my final year, but completed my degree; from the library this time and not a hospital bed. After graduation, I started a new job and became a Londoner.

Since my diagnosis, I’ve been sharing my journey with ulcerative colitis and life with a stoma on social media. I’m part of such a powerful community, all there to support one another, offer advice and a laugh when we need it.

The most valuable lesson I’ve learnt is, you can be confident and love your body, even if you look a little different. I grown to accept my body more now, than I ever did before my diagnosis. There isn’t a manual on how to deal with chronic illness or a disability, but I hope I can show you can live a full and happy life!

We are SO glad Billie has allowed us to share her story. Please follow her and her journey via Instagram - @billieandersonx