I want to start with a confession. I waited almost ten years to have my ostomy surgery. Not because a doctor told me to wait. Because I was afraid.
If you are reading this with a surgery date on your calendar, or a surgeon gently bringing up the word "ostomy" for the first time, I want you to know that fear is normal. I lived inside it for nearly a decade. And I want to share honestly what I was afraid of, what turned out to be real, and what I would tell my younger self today.
Contents
- What I Was Afraid Of
- Ten Years of Trying Everything Else
- The Moment Everything Changed
- So, Should You Be Afraid of Ostomy Surgery?
- What Has Changed Since I Was Scared
- My Life After Surgery
- What I Would Tell My Younger Self
- Talk to Someone Who Has Lived It
What I Was Afraid Of
When I was first sick, the options felt limited. Laparoscopic (keyhole) surgery for the colon was still brand new and not widely available to someone like me. The picture in my head was a full "stem to stern" incision down the middle of my belly, a long recovery, and a body I would never recognize again.
On top of that was the stigma. Back then, people did not talk openly about ostomies. I pictured a bag that everyone would notice, smell, or hear. I worried about dating, about the ocean, about martial arts, about whether I would ever feel like an athlete again. Honestly, I was afraid that an ostomy meant the end of the life I wanted.
You can read more about where I came from in my About Richard O'Hamill story.
Ten Years of Trying Everything Else
So I fought the disease with everything medicine offered. Over those years I took Humira, Remicade, prednisone and other steroids, and a long list of other medications, hoping one of them would finally put me into lasting remission.
Some of them helped for a while. None of them gave me my life back. I spent close to a decade cycling through flares, side effects, hospital visits, and the constant mental math of where the nearest bathroom was. I was "avoiding" surgery, but the disease was not avoiding me.
Every person is different, and many people do find medications that work well for them. Your gastroenterologist is the right person to help you weigh those choices. The Crohn's & Colitis Foundation is also a great place to learn about treatment options and what questions to ask.
The Moment Everything Changed
Here is the part of my story I don't tell often. Even after ten years of fear, I still wasn't ready. Between the medications and the painkillers, I had settled into a kind of fog. I had quietly made peace with staying sick. In my mind, being sick forever was still better than facing that surgery.
Then one day my doctor said something I will never forget. They wanted to introduce me to a hospice nurse to talk about my next stage of care.
In that moment, everything became clear. There was no next stage of healing planned for me. There was no treatment waiting around the corner. If I wasn't going to get better, the plan was to help me prepare to die.
That shock is what finally changed my mind. Surgery suddenly wasn't the scary option anymore. It was the only option that included a future. I said yes, and it was the best decision I have ever made.
I want to be honest, though. Saying yes didn't make the fear go away. I was scared right up until the moment of surgery. Even as the nurse was marking the spot for my stoma, I was still terrified of what my life would look like on the other side. And those first few weeks and months after surgery weren't much easier. Healing took time, learning to care for my stoma took patience, and some days I wondered if I had made the right choice. If you feel that way too, you are not doing it wrong. You are just at the beginning.
I share this because I don't want anyone else to wait until that moment. If you are holding on the way I was, please have the honest conversation with your doctor now, while you still have choices.
So, Should You Be Afraid of Ostomy Surgery?
Here is my honest answer: there are real risks, and it is reasonable to respect them. Like any major abdominal surgery, ostomy surgery can come with complications such as infection, sepsis, and later on, a parastomal hernia. Your surgical team will walk you through your personal risks, and you should ask every question you have. The Cleveland Clinic has a clear overview of what the surgery involves.
But I think the better question is this:
Is living with the disease more frightening, and more harmful to your long term health and quality of life, than removing the diseased part and living with an ostomy?
For me, the answer was yes. Long term, uncontrolled Crohn's disease or ulcerative colitis can bring its own serious dangers: ongoing inflammation, malnutrition, repeated hospital stays, the side effects of years of strong medications, and for some people a higher risk of colorectal cancer. The American Cancer Society explains how ostomies are used to treat cancer and other bowel conditions.
When I finally put those two fears side by side, the fear of surgery was a single, manageable event with a recovery plan. The fear of the disease was every single day, with no end date.
What Has Changed Since I Was Scared
If you are facing this decision today, the landscape is very different from the one I faced:
- Surgery has advanced. Minimally invasive and laparoscopic approaches are far more common now, which can mean smaller incisions and, for many people, a faster recovery. Ask your surgeon which approach is right for you.
- Education is everywhere. The American College of Surgeons Ostomy Home Skills program and the UOAA New Ostomy Patient Guide walk you through what to expect before and after.
- Specialist nurses can help you. A WOC (wound, ostomy and continence) nurse can mark your stoma site, teach you pouching, and support you through recovery. You can find a WOC nurse near you.
- The stigma is fading. People with ostomies are sharing their lives openly, from food blogs like Vegan Ostomy to active ostomate communities like Colostomy UK. You are not alone, and you never have to hide.
My Life After Surgery
Removing my diseased colon gave me my life back. I went from planning my days around a disease to planning them around the things I love.
Fast forward to today. I'm living an active, healthy life with a wonderful family and children, and I get to spend my days helping people all around the world who are going through what I went through. I am truly lucky to be alive, and I never take that for granted.
Today I surf, I teach martial arts, I perform fire arts in front of crowds, and I chase my kids around like any active parent. I travel, I go through airport security, and I wear a seatbelt without a second thought. Living with an ostomy has meant a long, happy, healthy, full life for me.
That is also why I started designing support belts back in 2009. I wanted to get back in the water and back on the mat with confidence, and I wanted my pouch to stay secure and supported while I did it. That journey is what eventually became HIRO, and why I care so much about helping other ostomates stay active. If you are curious how I wear mine, I wrote about vertical vs. horizontal ostomy belt styles and why I personally prefer horizontal for sports.
If you are worried about hernias after surgery, the UOAA has a helpful page on how to tell if you have a parastomal hernia. Talk with your nurse or surgeon about support garments and safe activity as you heal.
What I Would Tell My Younger Self
If I could go back and sit with that scared young man, I would tell him three things:
- Your fear is valid, but do not let it make the decision for you. Get the facts, ask the hard questions, and compare the real risks of surgery against the real cost of staying sick.
- Talk to people who have been there. Find a support group and meet people living full lives with an ostomy. It changes everything.
- An ostomy is not the end of your story. For me, it was the beginning of the healthiest chapter of my life.
There is one more thing I think about often. Around the same time I was sick, I had a friend who was going through almost the same thing. He had Crohn's disease like me and was facing a similar surgery. Sadly, his disease became too much. He developed sepsis, and he passed away.
I still carry him with me. His story is a big part of why I know, without a doubt, that choosing surgery was the right decision for me. So if you are on the fence and can't decide, I ask you to take a quiet moment and picture both paths. On one side is a life after surgery where you are healthy again, doing the things you love. On the other is the risk of staying sick, where an infection, sepsis, or something you never saw coming could take that choice away from you. Please don't let fear make that decision. Let hope have a voice too.
Talk to Someone Who Has Lived It
If you are facing surgery and want to talk with someone who has an ostomy, you are welcome to reach out. Our team offers Zoom video chats with a person who lives with an ostomy, and you can call us at 808.600.3567 during support hours.
If you have any doubts or questions, please talk to someone who has been through this. Hearing real stories from real people made more difference to me than anything else. Follow along with my journey on Instagram, YouTube, Facebook, and LinkedIn, and seek out the many other ostomates sharing their stories online, like Vegan Ostomy and Ostomy Connection. And please, feel free to reach out to us too. We would love to hear from you.
Whatever you decide, I hope you make the choice from a place of information, not fear.
With aloha,
Richard O'Hamill
This article shares my personal experience and is not medical advice. Please talk with your doctor, surgeon, and WOC nurse about your own situation.