When I had surgery to remove my colon (which is called a colectomy) and place an ostomy, I knew exactly what was happening. I knew I would wake up with a loop ileostomy. It was the first step in 2-step j-pouch surgery to treat my ulcerative colitis.
My colon was falling apart, full of inflammation and pseudopolyps (non-cancerous polyps that can occur with IBD). I had a few months to prepare for surgery, including meeting with my surgeon and an enterostomal (ET) nurse. When I woke up with a stoma and an ostomy appliance, it was not a surprise.
Did you know that being diagnosed with ulcerative colitis or Crohn’s disease is a disqualifying condition to serve in the United States military? However, it seems that it’s not always an automatic reason for discharge. Lt Colonel Joshua Nelson was diagnosed with ulcerative colitis and needed to have ileostomy surgery. It cast into question his future as a pilot in the Air Force Reserve. Learn his story of how he worked with his medical team in order to keep doing the job he loves, his advice for others like him, and tips on flying that any ostomate can use.
Did an IBD diagnosis change the direction of your life? For Danielle Golden and Joe Teeters, being diagnosed as a young adult had a profound influence on their lives. The plans they had for their lives were derailed, but they only met, formed a strong friendship, and founded Double Baggin’ It because of their IBD. Learn more about their disease journeys, how they met, and how they use humor to raise awareness of IBD and ostomy life both inside and outside the IBD community.
Ostomy Awareness Day is an important observation that helps eliminate the stigma surrounding ostomies and ostomates. Ostomy surgery is lifesaving and many people who have an ileostomy or colostomy surgery due to ulcerative colitis or Crohn’s disease experience improved quality of life.
What has been your experience with ostomy surgery? If you know someone who lives with an ileostomy or a colostomy, you’ll likely get your impression about having a stoma from them. But what if that person struggles to accept their stoma? When Amber Wallace Ogle of The Ostomy Diaries was faced with ileostomy surgery to treat her Crohn’s disease, she was reminded of the negative experiences of her family members who lived with an ostomy. However, it didn’t take long after her surgery before she was embracing life again and working to show others that life with an ostomy can be fulfilling and beautiful. Amber tells her Crohn’s disease story, gives 5 tips for advocating online, and shares a message she received from a family that has been touched by her advocacy.
Ostomy surgery can improve quality of life for people with IBD but it is still not discussed often enough, or early enough, in the disease process. This leaves patients to cope with the surgery and the acceptance of an ostomy during a time when they are already critically ill. For Austin Powers, who goes by The Ostomy Guy, he exhausted all his possibilities to treat complications from Crohn’s disease before having surgery to place an ostomy. It was several more years before a quick encounter with another ostomate set him on the journey of acceptance. Today, Austin runs a podcast and has written a book about his experiences, The Ostomy Guy Story: Memoirs of a Bagman, which is available on Amazon. Listen all the way to end to hear one of the many letters Austin receives from his readers, who are inspired by his story.
Ostomy surgery is a life-saving procedure that can improve quality of life, but that doesn’t mean it is always easy to accept. Stephanie Hughes founded The Stolen Colon after having surgery to place an ileostomy to treat her Crohn’s disease. She’s an ostomate, but she’s also a writer, a woman, a wife, a mother, and a resource for people in the IBD and the ostomy community. She shares her journey through Crohn’s disease and acceptance of her ostomy with me, including what her kids think of her stoma, how she manages issues around privacy, and what happened when a person who didn’t know she had an ileostomy told her that ostomies were smelly. Listen all the way to the end to hear how Stephanie’s advocacy in the ostomy community touched one family and gave them hope.
Living with a permanent ileostomy as a result of Crohn’s disease hasn’t stopped Ryan Stevens from participating in the sport he loves. He worked his way back from crushing IBD flare-ups and multiple surgeries in order to train for the ultimate triathlon: the IRONMAN. In this second part of Ryan’s story, hear what happened to him while on the bike route, why the ostomy may actually provide an advantage, and Amber’s unfiltered thoughts on the competitiveness of the triathlon community.
A diagnosis of Crohn’s disease and an ileostomy hasn’t stopped Ryan Stevens from competing in triathlon races. He swam competitively through high school and college and was sidelined by Crohn’s just after falling in love with triathlon. He’s worked his way back twice from devastating flare-ups to get back to swim, bike, run, and now to the ultimate race: the IRONMAN. Come with us as we relive the IRONMAN Triathlon in Madison, Wisconsin and discuss how Ryan prepared and competed while living with IBD and a permanent ostomy.
A man sits near me in the road, offering Oreo cookies to the bike riders pedaling past him up a massive hill. Another man walks over and asks, “Did you give out cookies last year, too?”
“Probably,” says the man in the road.
“Well, if it was you, it was a highlight for me, getting that cookie. I really appreciated it.”
I am on the sidelines of the IRONMAN Wisconsin race: a feat of endurance for athletes who will swim 2.4 miles (3.86 kms), bike 112 miles (180.25 kms), and run 26.22 miles (42.20 km) in one day. Many of the spectators are previous racers themselves: they sport hats, shirts, backpacks, and even tattoos with the IRONMAN logo.