One Patient’s Perspective on How to Adapt to Living with an Ostomy Bag

Collin Jarvis was 21, athletic and a captain of his university’s track and cross-country teams.

He was about to enter his senior year at the University of California, Berkeley when he was diagnosed with ulcerative colitis.

Only eight months later, in March 2014, Jarvis’ condition unexpectedly worsened and he had to undergo an emergency colectomy.

Jarvis said he never expected to develop complications from his illness so soon. After his surgery, he found himself living a totally different life than he ever imagined — as a person with an ileostomy.

“Having a colectomy and needing an ileostomy came as a complete surprise and set me up for many challenges,” said Jarvis, who lives in Oakland, Calif., and is vice president of Stealth Belt, Inc., a company that sells custom-made ostomy support belts based in Johnson City, Tenn.

Today, Jarvis is so passionate about sharing his story, he will be a speaker at our Wild On Wounds conference in Las Vegas next month.

Living with an ostomy bag is difficult

Jarvis said it took him approximately one year to get comfortable with his new reality from a psychological standpoint, and the realization he’d likely be living with an ostomy bag for the rest of his life.

“That first year was very difficult,” he said. “Previously, I was a confident person but now I felt vulnerable having to wear a medical appliance.”

Jarvis said that year was most difficult because he:

• Developed some post-surgical infections.
• Wasn’t running track anymore.
• Felt the loss of his running career.
• Was isolated from his teammates.
• Didn’t receive the psychological help he should have earlier.
• Had opportunities to get help but didn’t take them.

The transition to his new life from an emotional and psychological perspective was a roller coaster, to say the least.

“I went from being confident to a fault and leading a somewhat selfish lifestyle, to now feeling a deep appreciation for all of the good things in my life that I had, including my running and the friendships I made through running,” Jarvis said.

Once he was in the clear physically, Jarvis focused on trying to recapture parts of his previous life before his surgery. That included finding ways to start running again.

“As an athlete, I set a high bar regarding what I expect from my body,” he said. “Because I’m so active and live in a warm climate, I sweat a lot. With sweat, there is shifting of the appliance and leakage from the ostomy bag, which was frustrating.”

The solution for Jarvis was finding a product called a Stealth Belt.

“Wearing the belt to support my appliance allowed me to start running again, and as I did before,” he said. “I was able to get that part of my life back. This was so impactful for me in a positive way.”

Once Jarvis could run again, he developed an even deeper appreciation for his life and abilities.

“I used to view running as a competition, then realized it’s a celebration of my body’s capabilities,” he said. “I wanted to share this with others. Having an ostomy is not a death sentence. I wanted people to know that.”

While Jarvis felt well cared for by his clinical team and ostomy nurses, he had a deep desire to share his experiences and what he learned through this process with both patients and clinicians.

His goal was to help other patients living with an ostomy bag through their journeys. This led to public speaking on the topic and his eventual employment with Stealth Belt.

Insight for patients living with an ostomy

Words of wisdom from Jarvis for patients and clinicians include:

• Don’t hesitate to ask for help both physically and psychologically.
• Take risks and get out of your comfort zone. It’s worth it.
• Know there are two facets of having an ostomy: aesthetics and function.
• Inquire about physical therapy to learn more about strengthening your core, proper posture, lifting precautions and hernia prevention.
• Stay hydrated to prevent dehydration, which is common for patients with ileostomies.

Insight for clinicians on ways to improve their practice with ostomy patients involves:

• Patients may not yet fully accept their situation and may be in denial.
• Patients may be in a state of emotional shock if surgery was not expected.
• It might be difficult for patients to ask questions or they might not know what to ask.
• Because of severe postop pain and pain meds, the patients’ thinking will likely be fuzzy.
• Understand that patients have lost a part of their life and are grieving it.
• Share inspiring stories of other ostomy patients with your current ostomy patients.
• Give your patients hope that there is life after an ostomy.

Jarvis’ goal is to inspire other patients and give them hope for the future by sharing success stories of living with an ostomy bag.

“I want patients to know that if I can do it, they can do it,” he said. “I also want clinicians to understand their patients’ perspective and provide encouragement along with great care.”

Attend our Wild on Wounds conference to hear Collin Jarvis speak about his ostomy experience.