Eighteen years ago, on October 8, 2008, I had the surgery that saved my life. I've shared bits and pieces of my story at support groups and conferences over the years, but never all in one place. This is how it began.
Contents
- It Started With My Feet
- Charleston, and the Week I Stopped Walking
- My Mom Refused to Accept It
- Ten Years in a Loop
- The Word I Couldn't Accept
- Hospice or Surgery
- Clam Chowder and the Mirror
- Where That Beginning Led
It Started With My Feet
My story didn't begin with a Crohn's diagnosis. It began in high school, with my feet.
Back in 1996 and 1997, I was running cross country and track after football practice, three to five miles a day. Then I started getting strange pains in my feet. I figured it was a stone bruise or shin splints. My coach even helped me learn to speed walk without bouncing my feet on the ground, so I spent a whole season walking as fast as I could to keep up with my team.
Around the same time, I noticed blood in my stool. I saw GI doctors, who told me it was probably nothing major, gave me some steroids, and sent me on my way. I chalked it up to overdoing it as a young athlete.
Charleston, and the Week I Stopped Walking
In 1998 I graduated and moved to Charleston, South Carolina, to start at the College of Charleston. I was a young, enthusiastic college student who loved surfing, running, and sports, and my athletic roommates kept me on a workout routine every day.
Within a few months, the strange symptoms came back stronger. My ankles and legs ached, and patches on my shins turned brown and purple like bruises. In 1999 I ran the Cooper River Bridge Run 10K on feet that hurt every single day. I still had a great time.
Then everything sped up. I'd wake up with what felt like severe growing pains in my knees and shins. Over just a few days, I went from walking normally, to hobbling from my bedroom to the living room, to crawling to the couch. In about a week, I went from running to barely being able to walk.
I didn't want to admit I was sick. My roommates did. They were clear that something serious was going on, and one of them drove me to the emergency room. My mom flew into town, and I was admitted to Roper Hospital (Roper St. Francis) while a team of doctors tried to figure out what was happening.
The first diagnosis was erythema nodosum. I'll never forget the doctor sitting down quietly with my mom and me and telling us I should prepare myself for the possibility of never walking again. I was in shock. I was a runner. How could my legs just stop working?
I later learned that erythema nodosum doesn't cause paralysis. It's often the body's outside warning sign of inflammation somewhere else, and it's one of the most common ways Crohn's shows itself before anyone knows it's there. Looking back, my body had been trying to tell me for years.
My Mom Refused to Accept It
My mother refused to accept that answer. We left that hospital, and later I was treated at the Medical University of South Carolina (MUSC). Through all of it, my mom became the biggest advocate I could have asked for. She contacted doctors around the country, and we reached out to the University of Chicago, the Mayo Clinic, and other teaching hospitals, looking for anyone who could tell us what was really going on.
Eventually we got an official diagnosis: indeterminate Crohn's colitis. It looked like Crohn's disease overall, with some signs of colitis, and the treatment began.
Ten Years in a Loop
Over the next ten years, I tried just about everything. Remicade. Humira. Pentasa. Colazal. Azathioprine (Imuran). Heavy rounds of steroids. Strong narcotic painkillers like morphine and OxyContin to keep me comfortable. IV fluids, PICC lines, and TPN, which is nutrition fed straight through your veins.
My life became a cycle. I'd get really sick, unable to eat or keep food down, and check into the emergency room. They'd take me off food and put me on TPN for a few weeks until I got some strength back. I'd start eating again, go home, and try to get back to some kind of normal life and back to school. A few months later, the whole cycle would start again.
I came close to death more times than I like to remember. One time I walked into a doctor's appointment with a 104.9 degree fever, and when they said I needed to be admitted, I argued with them. I actually made them wheel me out to my car to get my laptop before I agreed to check in. I know I wasn't thinking straight, but if I was going to be in the hospital for weeks again, I needed my computer.
For nearly ten years, I bounced between healthy and sick, but we never solved the problem.
These are some of the last photos taken of me before surgery. I was around 200 pounds when I was healthy, and Crohn's took me down to 134. Those abs weren't from working out. They were from being sick. The binders in my hand held my daily sick journal, my food journal, how often I was sick, and all my medication info. I carried them to every hospital visit as notes for my doctors. You can almost see them weighing me down. That was my normal.
The Word I Couldn't Accept
About halfway through those ten years, my doctors brought in surgeons to talk about removing my colon and giving me an ostomy. There wasn't much explanation, and I didn't do any research. In my mind, I already had a picture of what an ostomy bag was, and I couldn't see myself living with one. The stigma I carried was so strong that it didn't even feel like an option.
Looking back, I know the narcotics played a part too. When you're on morphine and OxyContin for years, it's hard to think clearly, let alone make a rational, life changing decision about your own body. I wasn't just fighting the disease. I was trying to make the biggest choices of my life through a fog.
So I kept going. I tried diets, natural methods, lifestyle changes, and new environments, hoping to find a cure. Some of it bought me a few months out of the hospital, but always heavily medicated. It wasn't really a life.
Hospice or Surgery
In the summer of 2008, my care team recommended that I meet with a hospice nurse to help adjust my pain medication. I didn't even know what a hospice nurse was. It was the first time I'd ever met one.
Then it sank in. There was no longer a plan to help me get better. We had been through every medication and every research study, and none of them had worked. The plan now was to manage my pain, and this was the nurse who would help me through the end of my life.
For my mom and me, that was not an option. If the choice was hospice or surgery, I was choosing surgery.
We started researching, and I was lucky to find Dr. Peter Marcello at the Lahey Clinic outside Boston, one of the most advanced surgeons doing laparoscopic ostomy surgery at the time. After talking with him and his team, I knew he was the surgeon for me. We flew to Boston, and on October 8, 2008, I had my colon removed.
Clam Chowder and the Mirror
That first week in the hospital is mostly a blur of pain and medication. There's more I'll share about those first few days another time.
What I remember clearly is leaving the hospital. We went back to the hotel to recover for another week before flying home, and I ordered clam chowder and all the seafood I'd been wanting and hadn't been able to eat in years. Being able to eat without the pain and the constant rush to the bathroom was incredible.
But it was also strange. Everything now flowed into an ostomy bag, and I didn't fully understand how it all worked yet. When I looked in the mirror, I didn't see a new me. I saw what I'd seen for years in the hospital: skinny, sick, with medical things hanging off my body. I'd hoped surgery would change how I saw myself, but in that moment, it just looked like another day with a medical appliance stuck to me.
But I wasn't in the hospital. And that was the beginning of my new life.
If you're wondering what to eat in those early weeks, I put together a full guide on what to eat after ostomy surgery, including the soft foods I started with in the hospital.
Where That Beginning Led
Today I surf, I teach martial arts, do fire performances, and I play with my kids at the beach and around water parks. I've spent the last 17 years designing ostomy support belts, because once I started living again, I wanted every ostomate to have the support to do the same. That's what HIRO ostomy belts are about, and it's why I share which ostomy belt style works for different lives and answer questions in our ostomy belt FAQ.
If you're facing ostomy surgery and feeling the way I did, please don't let the stigma make the decision for you. Talk with a WOC nurse, read the UOAA New Ostomy Patient Guide, and find people who have been there through a local support group. And you can always reach out to me directly. I'm happy to talk.
Nurses were there for me at every step. If a nurse made a difference for you, share your nurse with us.
There's a lot more to this story. I'm working on a book, and I'll share more soon.
Mahalo for reading.
Richard O'Hamill
This is my personal story, not medical advice. Every person's journey with Crohn's disease and ostomy surgery is different, so please talk with your own doctors and ostomy nurses about your care.