​

It began with a chance meeting

​

Estrella “Star” Harrison, a WOC nurse from the University of California Medical Center, and Dawnette Meredith, an ostomate and ostomy support group leader, happened to sit next to each other at a manufacturer-hosted dinner. Within minutes, they realized they were witnessing the same heartbreaking pattern from different perspectives: overwhelmed patients struggling to cope after ostomy surgery and the toll on providers to meet their needs.

​

Dedicated WOC nurses and Ostomy Management Specialists provide essential education before discharge and often through  follow-up visits. Yet in the days and weeks that follow, much of that teaching fades. As patients begin caring for their ostomy at home and try to return to everyday life, questions arise, leaks may occur, and skin irritation may appear. Fear, isolation, and anxiety can set in as patients struggle to find the support and resources they need. Phone calls and clinic visits increase, and some patients, out of desperation, turn to the emergency department for help.

​

I lived this struggle after my own ostomy surgery—endless web searches, frequent calls to the clinic, and headed to the emergency department three times in the first year.  None of them turned out to be true emergencies. They happened because my recall was limited, my understanding of what was normal was unclear, I was dealing with leaks and peristomal skin breakdown, and I had no access to an outpatient ostomy clinic at the time.  I saw the same story repeat itself among the people in our support group again and again.

 

Star experienced this from the clinical side. Star was the only outpatient WOC nurse at a facility that performs roughly 500 ostomy surgeries per year. She was busy!  A fully booked clinic every day, plus roughly 30 patient phone messages a day from anxious patients. Many messages received at the clinic were similar and unrelated to medical care. They were patients searching for self-sustaining resources, information, and support.

​

We were two people at different parts of the same story who joined forces to empower patients and support clinicians.

​

Collaboration

 

First, we identified two key barriers driving patient anxiety, call volume, and unnecessary clinic and emergency visits:

Recall and Accessibility.

​

Recall

Patients struggled to recall:

• What a normal stoma and peristomal skin should look like

• Basic ostomy skills, how pouching systems work, and the purpose and function of accessories

• How to troubleshoot leaks and minor skin irritation

• When and whom to contact for help

• The ostomy supply process and the patient’s role in it

• How to return to daily life with confidence: bathe, eat, work, exercise, travel, etc.

​

Availability versus Accessibility

High-quality resources were already available, but patients often could not find, understand, or use them when they needed them most. Accessibility means resources are easy to find, simple to use, and accessible throughout the entire ostomy journey. We discovered that the more steps required to use a resource, the less likely a patient is to use it.  Patients were overwhelmed by the need to piece together information from scattered sources, simply because no comprehensive vendor-neutral resource existed.

​

Star and I wondered what other barriers existed between patients and information, and why they persist.

 

With the help of hundreds of patients and volunteer clinicians (both ends of the story), we gained meaningful insight into these barriers and began piloting strategies to overcome them.

​

Pilot and Discovery

In late 1999, in-person Ostomy 101 New Patient Classes were developed and piloted at UC San Diego Medical Center. They quickly showed that patients needed far more support beyond the hospital setting. Education had to continue at home, on demand, and in ways patients could easily access and use.

​

Ostomy 101 Began to Build: Listening, learning from the past, and designing for accessibility

​

1. Listening to nurses
   Ostomy 101 works closely with ostomy nurses nationwide to understand their challenges and create tools that support patients while easing clinic burden. (View poster published by the Journal of Wound, Ostomy and Continence Nurses)

2. Listening to patients and support groups
   Ostomy 101 is shaped by real patient voices. Our survey gathered 269 responses from ostomates across the U.S., providing insight into daily challenges and unmet needs.

3. Comprehensive Design
   No endless searching and trying to piece together information. One trusted, comprehensive hub where patients and clinicians can quickly find help.

4. Accessibility and Sustainability
   Ostomy 101 studied decades of past programs—what worked and what failed—to build solutions that last.

5. Privacy Priority
   No registration. No login. No personal identifying data collected. People deserve to access resources safely and privately.

 

Growth and Global Reach

 

On February 14, Valentine's Day, 2020, the Ostomy 101 mobile app launched. It felt hopeful. It felt like the beginning of something meaningful.

​

One month later, the world shut down.

​

COVID closed clinics, canceled in-person support groups, and isolated patients. The need for remote, reliable ostomy education, information, and support became urgent. Within three months, the Ostomy 101 app was being used across the U.S. and in 30 countries worldwide. The demand quickly outgrew the mobile platform.

​

In January 2021, the Ostomy101.com website was launched to serve as a comprehensive, accessible hub of ostomy resources.

After implementing the Ostomy 101 process throughout the care continuum, phone messages at UC San Diego outpatient clinic dropped by 90%, and patient adjustment scores improved by 90%.  View data and abstract poster HERE

​

In 2025, Ostomy 101 platforms received 50,000–60,000 page views per month, empowering patients and supporting clinicians worldwide.

​

Ostomy 101 was born from urgency, compassion, and lived experience.
It exists because patients were falling through the cracks—and because two women refused to let that continue.

 

There is still work to be done.
Please join us in expanding access to the education and support ostomates need to thrive. DONATE NOW

 

Dawnette Meredith
Founder & President
Ostomy 101 Inc. Nonprofit – Empowering Patients - Supporting Clinicians