In 1995, at age 40, Shelly Miller had had rough six months and a series of health setbacks, including an arterial blockage, diabetes diagnosis, and intestinal bleeding. The bleeding quickly led to her diagnosis of Crohn’s disease, and Miller began treatment. When infliximab (Remicade) became provisionally approved for the treatment of Crohn’s disease, Miller was one of the first people to receive it for treatment, and her case helped determine dosing intervals for future patients.

Miller had a demanding job as Vice President of Sales and Marketing for an auto parts distributor in Philadelphia. A career move later, Miller found herself in Chicago, in the care of the University of Chicago Medicine IBD Center team. Given the severity of her case, her family history of colon cancer, and the medical therapy available at the time, her best treatment option became surgery to remove her colon. When her IBD team recommended ileostomy surgery, Jan Colwell, APN, CWON, head of the Ostomy Care Clinic, stepped in.

“Jan is just amazing…. I really credit her for the fact that I’m still alive. I really, truly do… She was such an amazing advocate for me when things were really, really bad. We became closer through it, and we’re very good friends now. She’s just an amazing person,” says Miller.

Colwell and the IBD team at the University of Chicago Medicine helped Miller transition to life with an ileostomy. While her first surgery, performed by senior colorectal surgeon Roger Hurst, was successful, subsequent complications from gastric sleeve, hernia, and reconstructive surgery necessitated additional treatment to correct stoma irregularities.

“[Post-surgery] A few years went by, and I was struggling. I was literally lying on my back, because as soon as I would sit up, my stoma would fail… I jury-rigged a mirror over my head in order to work on my laptop. I learned I couldn’t even change my own bag; I had to get home help nursing. And they didn’t know as much about ostomies as I did! It was just insane.” explains Miller. “Jan [Colwell], God love her, she just kept sticking with me and advocating for me. She went back and she said, ‘We cannot leave this 50-something year old woman, in the prime of her life and her career, in a place where she can’t work again, and she can’t live her life.’” Following corrective surgery for Miller’s stoma, she was able to make a full recovery without further complications.

Now retired and residing near sunny Palm Springs, Miller now serves as the Secretary of Friends of Ostomates Worldwide (FOW-USA), an organization which helps to collect and distribute ostomy supplies internationally to patients who need them. In many parts of the developing world in particular, ostomates have neither expert care nor needed supplies for their ostomies, and FOW-USA helps meet these critical needs. For the past 12 years, Miller has served as a Board Member, newsletter editor, Public Relations Chair, and Vice President of FOW-USA.

“It’s important for me to give back wherever I can. Whether it’s to talk to somebody that’s getting ready to have an ostomy or had one and needs help… [As the Public Relations Chair], I get to see every email that comes to us as a thank you for the products we have shipped. It’s enormously gratifying,” says Miller.