Ostomy Athlete - Canada

Crohn’s Disease, Ileostomy, J-Pouch, Pro Lapsed, Cancer

https://innovativemedicines.ca/newsroom/patient-stories/meet-patrick-belton/

https://open.spotify.com/episode/0zrMPG3zlP5QZCBpLF8PtG?si=RWJB4TRgRn-_rumB7fiFSA

https://ca.news.yahoo.com/explorers-grand-slam-canadian-man-wants-to-be-first-disabled-person-to-complete-wild-adventure-130609940.html

https://music.amazon.com/podcasts/462327cf-3ed5-42fc-b6c4-27940d8aa229/episodes/3fc75f94-a8c1-4118-8365-53e139c85199/the-chronic-truth-patrick-belton---the-ostomy-athlete

https://toronto.citynews.ca/2023/03/09/ostomy-athletes-seven-summits-toronto-canada/

My Life as an Ostomate with Crohn’s Disease

A Personal Essay

From Patrick

There are moments in life that divide everything into before and after. For me, Crohn’s disease did not arrive as one dramatic moment. It arrived gradually, then relentlessly, and eventually consumed almost every part of the life I thought I was going to have. My ostomy became another dividing line: there was the person I was before disease and surgery, and there is the person I have become afterward.

I was diagnosed with ulcerative colitis when I was 21 years old. At 37, that diagnosis was changed to Crohn’s disease. Those simple medical words cannot begin to describe the decades between them. Crohn’s is called an inflammatory bowel disease, but that description feels far too contained and clinical for what it can do to a human life. It affected my body, career, relationships, confidence, independence and identity. It followed me into restaurants, workplaces, hospitals and friendships. Eventually, it followed me onto mountains.

Over the years I underwent surgery after surgery. My large intestine was removed, and eventually approximately half of my small intestine was gone as well. I lived with a J-pouch and endured a failed ostomy reversal. There were blood clots and pulmonary embolisms, severe dehydration, malnutrition, anemia, kidney problems, fractures, dental problems, skin cancers and exhaustion that sleep could not solve. There were times when maintaining a healthy body weight seemed almost impossible. There were also moments when survival itself was uncertain.

Yet some of the deepest consequences were invisible. People can understand an operation because they can see the scar. They understand a hospital admission because there is a bed, an IV and a diagnosis. It is harder to understand what decades of chronic illness can do to identity. You lose pieces of yourself quietly. A career becomes difficult to maintain. Social invitations become complicated. Relationships change. Financial security can disappear when your body repeatedly prevents you from working normally. The world keeps moving while you fight simply to remain part of it.

One of the themes in the videos I have made is isolation. In one scene, mountain and wilderness images move behind words about Crohn’s disease and isolation: people wonder why you hide away so much, without understanding the vulnerability, pain, nervous-system overload and constant grind beneath the surface. That scene captures something medical charts rarely show. Chronic illness can make you withdraw not because you have stopped caring about life or people, but because simply getting through the day can consume everything you have.

For years, washroom access dictated where I could go and what I could do. Something most people barely think about could determine whether I left home. Then came 2009 and the moment that changed my relationship with my body forever.

I remember waking after ostomy surgery and confronting a body I did not recognize in the same way anymore. There was a stoma on my abdomen. There was a pouch attached to me. The basic bodily functions that had been automatic for my entire life now required an entirely new way of thinking and living. That waking-up scene is one of the defining images of my story because an ostomy is not merely a surgical procedure. You awaken to a physical reality that can challenge identity, confidence, dignity and every assumption you once had about your body.

At first, everything was unfamiliar. But the meaning of that pouch changed over time.

My ostomy gave me possibilities.

That distinction matters because ostomies are often spoken about as though they represent the end of something: the end of normality, confidence, intimacy, sport, travel or adventure. My experience taught me something different. An ostomy can also be the beginning of getting something back.

It did not magically erase Crohn’s disease. It did not eliminate complications or return the years illness had taken. My ileostomy creates serious challenges. Output can be extremely fast, making hydration and electrolyte replacement essential. Nutrition requires constant attention. In remote environments and at altitude, those demands become even greater. But I refuse to define my ostomy exclusively by its limitations.

Instead, I began asking a different question: What can I still do?

Eventually that became a much larger question: What if I attempted things most people would never imagine an ostomate doing?

The mountains became part of my answer.

Mountaineering might seem a strange place to search for freedom after years of fighting a disease that has already pushed my body to its limits. For me, it makes perfect sense. In the mountains I am not simply a patient, a medical chart or a collection of surgeries. I am not the man who spent years desperately searching for washrooms. I am not defined by the pieces of intestine surgeons removed from my body.

I am a mountaineer.

Every step upward becomes a declaration that my life belongs to me. Mountains do not care whether I have an ostomy. They do not care about my scars, medical history or how many nights I have spent in hospital beds. They demand preparation, discipline, judgment, resilience and respect. I find something liberating in that honesty.

Living with an ostomy at altitude is not easy. Physical exertion, dry mountain air, cold and altitude magnify dehydration risk. Food has to become fuel even when altitude suppresses appetite. Ostomy supplies must be carried and protected. The pouch has to be managed where there may be no washroom, running water or privacy. These are real problems, but I have learned to see them as problems to solve rather than reasons to stop living.

The contrast between my video scenes matters to me. One image is the man waking after surgery in 2009, forced to comprehend a changed body. Another part of the story is the private world of Crohn’s disease: isolation, pain, vulnerability and the things other people cannot see. Then there are the outdoor scenes—the mountains, trails, water and wilderness—where the story moves outward again. Together they show the arc of my life more accurately than a list of diagnoses ever could: illness closed my world down; the ostomy changed my body; adventure helped me begin expanding my world again.

That philosophy became larger than my own adventures. Through The Ostomy Athlete, I want to change how the world sees people living with ostomies and how ostomates see themselves. I want a newly operated patient lying in a hospital bed to understand that an ostomy does not automatically mean a smaller life. I want someone afraid of showing a pouch to see ostomates standing proudly with theirs. I want people living with Crohn’s disease, ulcerative colitis, cancer and other conditions that lead to ostomy surgery to know their stories do not have to end at surgery.

They can begin again there.

That is why adventure and advocacy have become inseparable for me. When ostomates hike toward Everest Base Camp, climb mountains or attempt ambitious expeditions, the purpose is not simply to stand somewhere high and take a photograph. The mountain becomes a platform. Every kilometre walked and every metre climbed creates an opportunity to educate someone about life with an ostomy. Adventure can raise awareness, raise money and challenge stereotypes. Most importantly, it can give another ostomate permission to imagine possibilities they had stopped considering.

I know what it is like when illness makes the world smaller. I know the loneliness of chronic disease and the frustration of hearing that you “look fine” when internally you are fighting every day. People see the person standing in front of them. They rarely see the surgeries, scars, fear, exhaustion and memories underneath the clothing.

For years, it sometimes felt as though Crohn’s disease was writing my story for me. Disease decided where I could go. Disease influenced whether I could work. Disease affected relationships and dictated what happened to my body. Eventually I decided that, wherever possible, I wanted to take the pen back.

I cannot erase my surgeries. I cannot put my intestine back into my body. I cannot pretend living with an ileostomy is always easy. What I can control is what I attempt to do with the life still in front of me.

That is why I choose adventure. It is why I choose mountains. It is why I choose advocacy. And it is why I refuse to hide my ostomy.

There was a time when I could look at the pouch attached to my abdomen and see everything disease had taken away. Today I see something different. I see survival. I see adaptation. I see possibility.

I do not need to pretend chronic illness is a gift. Crohn’s disease has taken too much from me to romanticize it. There are experiences I would never choose and would never wish on another person. But I can choose what I do with those experiences.

My ambition now reaches beyond simply surviving. I want to stand on mountains. I want to explore the world. I want to help other ostomates discover adventure. I want to raise money for people whose illnesses and surgeries have left them financially vulnerable. I want to educate people who have never seen an ostomy. I want someone facing surgery tomorrow to see what an ostomate can do today.

Most of all, I want to live—not cautiously waiting for the next medical crisis, not apologizing for the pouch attached to my body, and not allowing Crohn’s disease to have the final word.

My ostomy is part of my body, but it is not the boundary of my life.

Crohn’s disease changed the direction of my story. Surgery changed my body forever. There have been moments when both nearly ended my life. They did not. I am still here. And as long as I am here, there is another trail to walk, another mountain to climb, another person to encourage and another adventure waiting beyond the horizon.

I have spent enough of my life being defined by what disease took from me. The rest of it will be defined by what I choose to do with what remains.

Live fearless. Live forward.

Ostomy Athlete - USA

Crohn’s Disease, Ileostomy, J-Pouch

https://restorativeostomysolutions.com/

https://ostomysolutions.samcart.com/products/the-ostomy-surgery-recovery-guide

https://www.stomatips.com/content/features/mastering-life-with-an-ostomy-how-occupational-therapy-can-help-you-thrive-post-surgery

https://www.youtube.com/live/mxsL8QZEMGk?si=zeziN1nuhnV3VsJg

You're not alone.

Ostomy surgery is overwhelming. There's a lot of information to learn about your stoma and managing your ostomy appliance.

It's also uncomfortable or even painful to move around after surgery. Your abdomen can feel heavy and tight. And you might not be moving as well as you once did.

I know because I've been there, as someone living with an ostomy. And as a hospital-based Occupational Therapist, I work with clients who are struggling with these exact issues. Helping clients feel confident as they begin to gain strength and become active again after surgery is my passion!

So, how can I help?

I’m going to give you the information, tools and strategies to trust your body, and to feel strong enough that you can start participating in your favorite activities again without hesitation.

Ostomy Athlete - Canada

Crohn’s Disease, Ileostomy

https://podcasts.apple.com/ca/podcast/robert-hill-its-not-the-mountain-we-conquer-but-ourselves/id1769685966?i=1000777400469

We all know that as a disabled person, we have many mountains to climb. In Robert Hill's case, this is not just a metaphor - he is the real deal as a mountain climber with an Ostomy. Robert was diagnosed with Crohn's and Colitis when he was 23 years old. He led a very adventurous life and this diagnosis devasted Rob. He found meditation very helpful, as suggested by his brother. Once he got his Ostomy, he went into Ostomy supply sales. He realized that most people were not even that aware how a person with an Ostomy functions, nor do they notice as much as the person themselves do - in other words, it is not something to be self conscious about, and who cares (as Rob says). Rob climbed 7 mountain summits - a feat impressive in itself, but more challenging with an Ostomy, There are also some advantages to having an Ostomy pouch and mountain climbing - Rob explains this in a candid manner. We feel that this episode we have put together is very interesting and inspiring, whether you have an ostomy or not. 

https://on.soundcloud.com/MHulXPr2aji8v9NvWI

https://goingup2010.wordpress.com/2010/06/15/rob-hill-a-pioneer-mountaineer-with-ileostoma/

Ostomy Athlete - United Kingdom

Crohn’s Disease, Ileostomy, Cancer

https://nalmclinic.com/about-1

registered specialist gastroenterology Dietitian

Jess is an HCPC registered, highly specialist gastroenterology Dietitian. She has over 11 years experience working as a Dietitian in the NHS and Private sector both in an inpatient and outpatient setting.

She has a specialist interest in Inflammatory Bowel Disease (IBD), having published a research paper in the European Journal of Clinical Nutrition entitled ‘Nutritional Status and Anthropometry in Children with IBD’, and also working clinically with clients. Jess also has significant respect and empathy for clients with IBD, having had the disease herself for the past 24 years. She has personal experience of IBD medications and surgery, and now lives with a permanent ileostomy (stoma). Jess is therefore able to offer both professional nutrition support, and a compassionate understanding to clients seeking IBD support and those living with a stoma.

Jess believes that nutrition plays a significant role in the IBD puzzle and takes pride in supporting clients with evidence-based, tailored advice to enable them to thrive from symptom relief and witness a significant improvement in their quality of life. Jess has experience working with clients requiring Enteral Nutrition and the Crohn’s Disease Exclusion Diet and also has experience with other IBD complications such as Bile Acid Malabsorption.

Jess is incredibly passionate about empowering clients with IBD to take back control over what many view as a life sentence illness by helping to optimise nutritional intake, support symptom management, and ultimately improve their quality of life.

Outside of being a Dietitian, Jess is a keen sportsperson, racing both road and mountain bikes, and playing competitive tennis; trying to show that having IBD and a stoma doesn’t have to stop people living life to the full!