“If I can channel that frustration into something positive, that would be great” – Henry’s story
My journey with Crohn’s Disease started in 2020.
I finished my master’s degree in Paris and moved to Lebanon, where I was learning Arabic and working for a local NGO.
At that time, I started to present with symptoms. It was really stupid – I tried to wish them away for too long before it became obvious that there was something pretty serious happening. In January 2020, I rushed back to Melbourne from Tripoli, via Beirut. Two days following my return, I was in the emergency department at the Austin Hospital in Melbourne. Five days after that, I underwent emergency, life-saving surgery to have my colon removed. In retrospect, I was experiencing symptoms for three or four months. My attitude was, “it’ll be right,” but deep down I was a bit terrified of what it could be. Essentially, I tried to wish it away rather than tackling it head on.
I was in hospital for about 20 days in total and was initially diagnosed with acute ulcerative colitis. In July 2022, my diagnosis was changed to Crohn’s disease, meaning that the stoma would be permanent, and I would have a colostomy bag for the rest of my life. Given this new reality, I decided that I needed to change something important to me: how I felt in clothes. Clothing and fashion had been an essential way for me to rebuild my confidence following my 2020 surgery, but I found that clothing, particularly pants, often required a compromise: to look good meant wearing pants that were uncomfortable. And to be comfortable meant wearing tracksuit pants, which I didn’t ever want to do, especially working an office job. I didn’t want to live in discomfort, or embarrassment due to the clothes I was wearing. I wanted to flip the script. I wanted to wear trousers that were both supremely comfortable and super stylish to help me take on the day with confidence in how I looked and felt.
So last year in May, I started creating a line of pants called COLINS that are thoughtfully designed to accommodate the bodies and lifestyles of people with stomas. I’m hoping to launch COLINS in the next 2-3 months.
After exiting hospital in 2020, I’ve received continuity of care from the Austin Hospital in Heidelburg.
I have surgeons, gastroenterologists and other medical experts working together, and I know that my case is always reviewed by a multidisciplinary board. When I get advice or information from my specialist, I know it’s an informed and holistic interrogation of my situation.
When they advised that the internal pouch wouldn’t be possible, and I’d need the colostomy bag for the rest of my life, it was very hard to hear. But I knew it wasn’t just one opinion. There was a broad consensus that it was the best option for my quality of life.
Having that confidence from my multidisciplinary team has helped me move forward with the diagnosis, rather than dwelling or regretting what could have been different. I knew that I’d received the best advice and care possible.
What particularly struck me was the care shown towards me, and my family at the Austin Hospital. The specialist teams at the Austin Hospital that oversaw my treatment are excellent human beings, and I know that they really cared about me, my life and my future. I wasn’t just a number.
I didn’t have a background in design.
I started this line of pants out of frustration because there was nothing on the market that combined comfort and style for people living with stomas. I was compromising one for the other. In office jobs, you can’t rock up in tracksuit pants every day. I was largely wearing pants that made me feel uncomfortable.
In 2022, when my stoma was made permanent, that was when the idea to make pants emerged. Since May 2024, I have been working on the concept with a design and manufacturing studio called Creation Collective Co. We’ve been working to get every detail spot on, so they’re fit for purpose when they go to market.
When I was initially recovering from the surgery, I was about 15 or 16 kilos lighter than I am now. Looking in the mirror wasn’t a pretty sight for me. Clothes were the one thing I could use to gain a semblance of confidence.
A major priority in the design of these pants is that they’re fit for purpose for people living with a stoma. There’s even an inner lining in the pants with materials used in activewear to ensure they are as comfortable as possible.
You can also adjust the pants with an internal belt. If your bag is full or empty, or if you’ve put on or lost weight, there’s in-built flexibility in the pants. The first release of clothing is informed by male-fashion. In saying that, anyone can wear them: with or without stoma, any gender.
I would also love to branch out into women’s fashion one day.
In living with a stoma, I’ve only played social mixed netball, which is non-contact.
I haven’t played basketball or soccer, or other team spots that I love, because I’m a bit scared of what can happen. Even going to the gym, it can be pretty uncomfortable with a stoma bag. This morning, I went for a swim before work, and the swimwear is far from ideal.
The way I wear my swimmers is boxers which comes up to the chest, and the bathers which come over the top. I feel a bit ridiculous doing that. With everything that I look at now, I have an eye for how it can be made to be more stoma friendly. With clothing, I never feel like I’m fully at ease. And if there’s a disaster, like your bag popping, I still find it hard to navigate. I continue to struggle with body image issues, which has also affected previous relationships. It’s one of those things I might always have to work on.
It’s been five years following my surgery, and I’m slowly learning to adjust and feel more confident. It rocks me every time that a disaster happens, but on the flip side, the stoma has given me life. If it weren’t for that stoma surgery in 2020, I definitely wouldn’t be here.
While there’s some frustration and difficulty adjusting to life with a stoma, I need to constantly try to remind myself how lucky I am to be here.
If I can channel that frustration into something positive that helps people, that would be great.