“It was my first ever hospital visit. I was 18, always healthy. I’d never even been on antibiotics. But I found out I had a rare genetic condition called familial adenomatous polyposis and hundreds of pre-cancerous growths in my large intestine.”

Leanne Hammond talked to the Mater Foundation about her story. If ever you’ve been worried about how you’re going to keep things in your stride, then make sure to read the full interview!

Leanne Hammond has an incredible story to tell. At 19, she discovered 100s of potentially cancerous polyps in her bowel due to a rare genetic condition. She had to undergo major surgery her operation meant an ileostomy bag. At first, this was disastrous news. But Leanne would eventually set up a hugely successful blog documenting life with an ileostomy bag as a young woman and publish a book to help others. Her campaign to break the stigma around bags and raise awareness has featured in countless TV interviews, newspapers and has gone viral on social media.

Leanne wrote a book about her experiences called Trouble With My Genes. She’s a published author at only 22 years of age. And campaigns to end the stigma in society around ileostomy bags and change stereotypes about what it’s like to live with one.

But this sense of confidence and conviction was not there from the beginning. Looking at Leanne’s glam selfies, you wouldn’t know it. But she used to wrestle with crippling anxiety on a daily basis. Her surgery wasn’t a simple procedure. And she experienced anxiety-inducing complications to her health. She also had to adjust to life with an ileostomy bag without any idea of what that would mean for her lifestyle, her relationship or her friends.

Leanne’s story starts with a very traumatic, first ever hospital visit. It turned her whole world upside down.

“When I was 18, I had symptoms of bowel troubles like frequent swelling. It went on for a couple of months, almost a year, before I went to a doctor about it. We thought it might be my diet or a little IBS, so I went on a strict eating regime. But that didn’t work at all. Following that, I had my bloods done and then had to go to hospital for a colonoscopy. I remember everything happened so fast after that.

“I’d never even been on antibiotics when I went for the colonoscopy. And when I came out of the colonoscopy, it was to the news that my bowel was like bubble-wrap. There was a lot of potentially cancerous tissue growth.

They discovered I had familial adenomatous polyposis or FAP. A genetic condition. Despite the fact that no one in my family showed for the effects of this condition. My sister was straight away checked but I was the only one.”

Because Leanne’s genetic condition had lead to the growth of potentially cancerous tissue in her bowel, she had to have immediate life-changing surgery. The surgery saved her life. But at 19, Leanne had to deal with having an ileostomy bag. The stereotypes and lack of awareness around it had a huge effect on her perception of it as a disastrous event.

“I was devastated. It was just so hard to digest it. I was thinking to myself, this is my life changed forever. I didn’t know what food I could eat or what clothes I’d be able to wear or even what the bag would look like or what it would be like. I remember one of the days, I went on to Youtube and looked up a video of a girl changing one. I fainted.

I was so overpowered by how quick this change was going to affect my life. How little I knew about it or could really talk to anyone else about it. I couldn’t talk to someone else who had been through it about what the day-to-day would be like with this bag.

After the surgery, things didn’t really get better. Even when I got the bag and began to understand that it wasn’t going to have the negative impact on my life I’d imagined, I worried about what people would think of me for having it. I kept worrying about the he-said, she-said. I stayed in the house and only left once a week.”

Leanne has since written a book about her experience called Trouble With My Genes. It was an incredibly difficult time for her. Her anxiety over daily life with an ileostomy bag was compounded by a crippling anxiety over her health. Leanne suffered complications following initial surgery. She had to be rushed into an emergency operation four days later when doctors discovered she had a parastomal hernia and twisted intestines.

Leanne with a nasogastric tube in the Mater following complications with her initial operation. NG tubes are notoriously unpleasant. This was a difficult time for her.

As a result of so many serious health scares in such a quick series after her initial hospital visit for a colonoscopy, Leanne began to have serious anxiety attacks.

They crippled her self-confidence further because of the form they took. She experienced a physical pain below her diaphragm, around her abdomen, and thought it was another complication following initial surgery. She used to rush to A&E afraid that something was going wrong and in the best scenario she’d have to be weeks more in hospital and have further operations.

This is an excerpt from her book:

“I didn’t understand how a pain could be all just in your mind. I always thought anxiety was palpitations and breathing difficulties. I didn’t have either and I think that was the main reason I denied having it. Every time my anxiety started I automatically thought it was a pain in my stomach. Each time, my Dad said, it’s only anxiety I promise you, I had it all myself when I was younger. I got so annoyed because I didn’t understand how everyone could assume it was “just anxiety”. They hadn’t felt the sharp intense pain right in the middle of my stomach!”

Leanne realised after a number of false alarms that the pain was caused by mental anxiety. But realisation was just the first step. Recovery was next. But nothing worked. Not breathing exercises, meditation or counselling with a psychiatrist.

Nothing worked until Leanne started to write.

Writing for Leanne would become a way to champion awareness and end the stigma plaguing her about life with an ileostomy bag. Her first breakthrough came when the suppliers of her ileostomy bag asked her to do an anonymous Facebook post for their blog. They wanted her to give an insight into what she had been through and her current situation for their followers on social media.

“They had asked me for 1,000 words. I thought that was a lot at the start. But I struggled to get under 1,000 words when I started going, I was literally just writing and writing and writing.

I wrote two big paragraphs and remember sending them across to my sister. She came back straight away and told me I had to do something more. She pushed me by telling me I’d help so much people if I was brave enough to do it.

So I kept writing. I had this flood of words. I set up my own page then before posting anything. Because even if I’d accepted to start blogging, I still didn’t want anyone to know it was me. And I’d no photos on this page or anything.

My first blog post on the page was a Saturday evening. I said if I get one negative comment then that’s it, it’s over. The following morning when I checked, the post had been viewed maybe 50,000 times.

This photo links to Leanne’s original Facebook post, click it to read in full

Just like my health, it all happened so fast. The Irish Daily Mirror messaged the page and asked if I’d do a non-anonymous article. My Mam was getting so worried because I suffered from anxiety. But straight away what my sister had said originally about it helped me. I knew I was helping others and that was a powerful thing. It wasn’t like before when I was losing control in a whirlwind of events that swept me up. I was in control this time and I was the one writing the story and deciding what happened next.

So I decided to go live with it. I chose to tell people who I was. The Irish Daily Mirror wanted a photo of me. So I put one up on the Facebook page. Then TV3 got in contact with me about speaking on Ireland AM. So I booked myself in for speaking on air in front of thousands of people. Of course I was worried about getting an anxiety attack. But I knew I had to help others. And also, others were already helping me. In the 48 hours since putting up the first story, I was contacted by two people with my condition. I’d never spoke to anyone else with FAP before.

So it was working both ways. I was talking to people and receiving insight from others about how they go on with daily life for the first time. And people were contacting me, telling me, I’m going to have a colostomy what should I expect? And I thought about what a difference it would have made to me if I could have been the one asking those questions, if I’d had someone to talk to about it who’d not only knew the facts but had lived it.”

Leanne decided to put herself out there and to keep writing. She used Facebook to post blog updates. She went on TV. She did a feature for Cosmopolitan. And she went on to write over 60,000 words about her experience in a book called Trouble With My Genes.

Just like before, the transformation was almost instantaneous and remarkable.

Leanne became more and more positive. She began to leave anxiety behind. She went from providing insight into her experience as someone living with an ileostomy bag to championing awareness and becoming a role model for not letting it affect you too much.

She started taking ileostomy bag selfies. She wanted to overcome the stereotype that it was this large, bulky bag. Her ileostomy bag became the ultimate fashion accessory, one that had saved her life. So she decided to flaunt it. She posted glam photos so that other young women and men could see an ileostomy bag didn’t mean the end to going out and feeling fab about yourself.

“What pushed me was that I realised it wasn’t the end of the world. And I needed to help other people understand that. There are some girls out there with a bag and their boyfriends wouldn’t even know. But it does so much damage to keep that in and feel ashamed. I know because I remember being afraid, embarrassed and what that did to me. The worry kept me inside. I was stuck to my bedroom with anxiety when my friends were away on a gorgeous holiday. So it’s a point to me to go out now and show them it doesn’t affect how people think or even the type of clothes you wear.

In the same way, I wrote a book because if I’d have been handed a book when I went in to be diagnosed, I’d have read it. I’d have bought a hundred of them. Because when all you have are information sheets, you don’t get any sense of what life’s going to be like afterwards on a night out or a holiday abroad or with your boyfriend. That type of insight was lacking for me. And I wanted to put it there and to talk about normal life with a bag for other people who were facing up to that reality.”

Leanne at the launch of her book “Trouble with my Genes”, click on image to preview a copy online for sale

Leanne also found writing the book therapeutic. When she first experienced anxiety attacks, she tried counselling, meditation and breathing exercises. Nothing worked. But writing was a cure for her. She had set herself a target of 60,000 words. At the start, she was worried about reaching it. But as she continued to sit down and put everything down on the page, she stopped worrying. Writing was easy for her. It hadn’t always been. She’d never liked it much at school. But now, it came naturally.

“I never even told anyone I was writing a book at the start. I never pictured finishing it. But I pushed myself. I wanted to be able to hand it to someone who was going to face a colostemy or face anything serious. And it helped me so much, it was a therapy to me. To be honest, I think that’s why I’m now in the position I am today. It became my therapy, my way of understanding what I went through. It was such a blur back then when I went through it. It was only when I was writing it that I properly understood what had happened, how it had affected me and how it had affected everyone else around me.”

Leanne has since had surgery and no longer needs an ileostomy bag. She has learned to cope with anxiety and suffers from it less. She’s also been offered a second book deal. But right now, she doesn’t know whether she’s going to take it or not. The past few years have been a mad rush between her healthcare and the media. Now, she’s just learning to enjoy the moment and relax!

Leanne photographed here on a beautiful beach in Mexico


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