Billie Anderson’s journey with ulcerative colitis – and building body confidence with a stoma.
When you poo into a bag on the outside of your body, it can be hard to have body confidence, but Billie Anderson is breaking taboos and sharing her journey from young university student to body acceptance advocate to help us realise that all bodies are beautiful…and that difference should be celebrated.
Read her story here…
No one prepares you for being sick your whole life. You have to work it out on your own. Or at least I did, when I was just 20.
I’m Billie, a 24-year-old Brit and three years ago my life was turned upside down. I’d just finished my first year at university and was meant to be having the summer adventure of my life…when I noticed something wasn’t right.
The first symptoms of ulcerative colitis
I was tired and bloated all the time, then I started noticing blood in my stool. I panicked and turned to Dr. Google, which only made things worse. So, I chose instead to ignore it. I was only 19, I wasn’t sick, it would go away on its own, right? Wrong.
After a month or so I plucked up the courage to see a doctor, but instead of calming my fears, it made things worse when, without a single test, she said “I think you’ve got bowel cancer”.
A colonoscopy was scheduled, and the results…found nothing.
I went back to university and within a couple of months, I was bed bound, crawling to the toilet 20+ times a day. I lost more than two stone in a matter of weeks, I couldn’t eat, I couldn’t sleep. My skin was grey and my period stopped. I knew something was seriously wrong.
Misdiagnosing ulcerative colitis
Eventually, my Dad dragged me to the hospital emergency department. Harsh lights hurt my head and people rushing around made me feel nauseous and anxious. I had to lie on the floor of the waiting room to stop myself from passing out. After five hours, the doctor handed me some iron tablets and said I was probably iron deficient from my menstrual cycle. I thought ‘last time I checked bleeding from your butt wasn’t part of my menstrual cycle”, so I booked an appointment to see a gastro specialist.
I don’t remember the first appointment with my gastroenterologist. My body was exhausted. I hadn’t slept or eaten properly in three months. He took one look at my grey skin, lifeless eyes and resting heart rate of over 150bpm and sent me for every test under the sun. 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.
So what is ulcerative colitis?
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, causing ulcers and bleeding.
One nurse told me ‘your colon looks like it’s been badly sunburnt and dragged across a pavement’. Unfortunately, ulcerative colitis is also incurable.
I started a cocktail of strong medication to try to get my symptoms under control, but the side effects included facial swelling, acne and a burnt face. My hair fell out and my joints swelled up. I was taking more than 30 pills a day and having IV therapy once a month – but the diarrhoea and bloody stools continued.
In the midst of all of this, I was trying to finish my second year of university. I wrote papers from the hospital and asked my friends to hand them in for me. I basically did the entire year either attached to an IV in hospital or confined to my flat, too scared to move more than two feet from a toilet.
After 11 months of treatment, my gastro specialist told me I couldn’t tolerate any more medication and needed to have surgery.
I pleaded with him to first finish my degree, thinking I could manage another five months, but he told me, “you won’t make it that long if we don’t get that colon out. Now”.
Surgical treatment for ulcerative colitis
So, I pressed pause on my life, left university and packed for surgery, spending Christmas in hospital. Almost a year to the day of my diagnosis, I had my entire 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 three 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 have started to wear off, my hair grew back, and I started to fill out, grow stronger and regain my confidence. I’m no longer chained to a bathroom and six months after my surgery I flew to Ibiza with friends for a holiday. Following that, I returned to university and completed my degree – from the library this time, not a hospital bed. After graduation, I got a new job and moved to London.
Life with a stoma
Since being diagnosed, I’ve been sharing my experience of ulcerative colitis and having a stoma on social media, chatting to thousands of people worldwide, supporting each other, offering advice and having a laugh when we need one. I’m determined to break not only the taboo of poo, but the stigmas women face every day.
Periods, sex, body acceptance or disability, I’m determined to make my social media a safe space where people can reach out and meet like-minded individuals. Since sharing my disability, I’ve found the confidence to break down the taboos women constantly face, and it’s been liberating.
If I could, I’d go back and tell my 18-year-old self not to be scared about starting your period at a friend’s house, to stop worrying about your natural underarm hair, and that you don’t have to fit anyone else’s ideal of beauty – you should create your own standard.
These are the challenges girls face every day: stigma around female pleasure, being fobbed off by doctors for abdominal pain as ‘just period pain’, the pressure to fit a mold the world has made for you. I want to break that mold and show people that nobody else can decide who you are and if you don’t ‘fit’ that’s amazing – we should all celebrate our differences and lift each other up…not drag each other down.
I think the most valuable lesson I’ve learned that you can be confident and accept your body, even if it looks a little different. I’ve been on the front cover of magazines, appeared in body confidence campaigns and marched through central London in my undies on International Women’s Day in 2019. There’s no manual for dealing with chronic illness or disability, but I hope I can show people who are different how to live a full and happy life – and break down a few taboos along the way!
I started using Modibodi for two reasons:
- To help reduce my period plastic. With a stoma bag, there is a lot of plastic that comes with my supplies. The bags are made of plastic, the packagingandboxes they come in are made of plastic. So unfortunately, I can’t reduce the plastic in my stoma supplies, which is a real dilemma. I can, however, reduce the plastic I use to manage my period. A woman will have around 500 periods in her lifetime - that’s a lot of plastic if your main go-to is tampons or pads, which is why I turned to Modibodi to reduce the amount of single-use plastic I use. This is one of the ways I’m hoping to be part of the solution and not the problem.
- I tend to struggle with tampons in recent months. My surgery involved removing my whole intestine but leaving the rectum which isstill inflamed with colitis and bleeds regularly. It’s a pesky little piece of bowel that’s left in to give me more options in the future, but I’ve found in recent months it’s been a little problematic. This doesn’t happen with everyone, but it isn’t uncommon for women to come out of a surgery like mine with vaginal issues too! Because of the inflammation I still have in that piece of bowel, I sometimes struggle with tampons. Wearing Modibodi takes away the pain of using tampons when my body is stressed, and, unlike pads, they give me peace of mind that I won’t leak.
My life isn’t that of your everyday woman in her 20s, but my experience has taught me to appreciate difference, disability and to realise that every body is precious – and we should all strive to love the skin we’re in.
Follow Billie's journey @billieandersonx