Climbing Mountains For Ostomy And Crohn’s Disease
Education and Advocacy The founder of Intestinal Disease Education and Awareness Society shares his inspirational story of climbing the world's tallest mountain to raise awareness for Crohn's disease and ostomy.
Robert Hill was diagnosed with an aggressive form of Crohn’s disease as a young man, resulting in the removal of his large intestine and permanent use of an ostomy bag. Instead of feeling sorry for himself he set out on a mission to rebuild himself — mentally and physically — and inspire awareness by climbing the Seven Summits of the world.
Mediaplanet: How did you first know something was wrong?
Robert Hill: I first noticed something was wrong when I started having abdominal pain, diarrhea and felt nauseous. At the time I didn’t even have a GP, being a healthy young man, didn’t ever have the occasion to need one.
Mediaplanet: What where the circumstances of your surgery?
RH: I was given the option of ostomy or death. I choose life with an ostomy. And, man — what a life!
MP: How did you prepare for what came next?
RH: I was lucky, before surgery I had the opportunity to speak with my aunt and a couple others who had ostomy surgery, we talked about the product — how to change it and how it gave them the chance to live their lives.
MP: Why did you start to feel different about your situation?
RH: I looked back to when my Aunt was sick and how so much of her condition was kept from us kids. As I gained my own knowledge of IBD and life with an ostomy, her secret started to bother me. Why would someone I loved so much and thought the World of not share her pain with me? With this new awareness I started to answer the personal question of “why me?” I took the wonder and internal rage of living with IBD and looked to turn it into something positive.
MP: What helped you flip the stigma switch and be able to talk about your situation?
RH: Knowledge was a key — understanding the illness; knowing the physical “why” of my ostomy surgery became my corner stone. In reality, living with IBD and an ostomy is not just physical — it is mental, emotional, and spiritual as well. I needed to address all these components.
My new understanding lead to me presenting to my classmates a business proposal to climb the Seven Summits to raise awareness of IBD and ostomy surgery. It was the first time I opened up about my illness and only found awe and support — why had I waited so long?
"My climbing was getting to the point where I was spending more time in the mountains, so why not take my passion for climbing and love of the outdoors and turn that into something positive."
MP: What inspired the idea to climb the world’s tallest mountains?
RH: It started off wanting to inspire people the same way I had been inspired by Terry Fox and Rick Hansen. My climbing was getting to the point where I was spending more time in the mountains, so why not take my passion for climbing and love of the outdoors and turn that into something positive.
MP: How did No Guts Know Glory resemble living with Crohn’s Disease and an ostomy?
RH: The No Guts, part is easy — I lost mine to Crohn’s disease. Know Glory is more about how strong we are as human beings. From the brink of death, to the summit of the tallest mountains around the world — it is about the journey and how each step makes us stronger.
MP: Where did you drawn support and strength from on your campaign and how have you given it back?
RH: The support and love I’ve received starts with my parents, which I have always found in them. A great core group of friends who, even when on my worst day, wouldn’t let me draw away and worked to get me out to enjoy a taste of the life I had. Later I would find support from the amazing people living with IBD and Ostomies I would meet in my travels. Sharing incredible stories of strength allowed us to learn from and lean on each other. I found that nothing breaks down barriers — social, cultural, or language — like a common illness or struggle.
MP: What is a “bag flash” and what does it represent in the Ostomy community?
RH: The “bag flash” — well, it is a bit of a “in your face!” It is about pride. It is about showing yourself, others living with ostomies, and the World that life is worth living!
MP: Do you have any advice for those facing Crohn’s disease or ostomy surgery?
RH: Again, knowledge is key! And, on those darks days, find that one thing that you can hold on to. For me that was climbing. It just has to be enough to get you through. Know that there are others out here that have walked the path you are on, and that you are not alone. Although your illness or ostomy is a part of you — never let it define who you are.