Updated: Nov 13, 2020
Well, hello there, everyone! Welcome to vagusnervegirl.com! I’m Kelly Owens. I struggled with Crohn’s disease for 15 years before I found the clinical trial that has turned my life around.
Prior to my diagnosis of Crohn’s disease, I was an active kid. I played basketball, field hockey, softball, and track & field, acted in a couple of plays and worked on my uncle’s farm.
All of that changed in the early months of eighth grade, at only 13 years old.
I was in the play “The Music Man” and during tap dancing practice one day, I twisted my ankle. The swelling never diminished. Eventually, the orthopedist withdrew 10 CCs of fluid, only to have it fill back up by that evening. Further, I started experiencing gastrointestinal symptoms that had me leaving class every few minutes to go to the bathroom. As the years progressed, inflammatory arthritis spread to every joint in my body.
Three years after diagnosis, at 16, I had my first pyoderma, which is basically a flesh-eating skin ulcer that took 18 months to heal. At 19 years old, I was hospitalized because inflammation attacked my heart, my right leg was so swollen that they drained it three times in a matter of a day or two, and I had a couple blood clots from immobility.
Then, at 25, I was diagnosed with Osteoporosis.
Over the years, I needed many different assistants to get around. In the hospital, I needed a walker to regain balance to walk after being immobile for so long. Sometimes, I needed a wheelchair. But my go-to mobility assistant was a pink cane with roses that my dad gave me when I was 19.
I was on and off steroids ever since diagnosis — generally at 40 to 60 milligrams during really bad points, and then at 10 or below for maintenance. That was the only thing that held me over.
Until now, I’ve never been in remission. I’ve been on every biologic and immunosuppressant under the sun, Remicade, Humira, Cimzia, Entyvio, Enbrel, Methotrexate, Stelara, Simponi, Imuran, 6mp, Pentasa, Entocort, Uceris, Sulfasalazine, Asacol, Plaquenil, Celebrex, and Lialda.
None of them worked. My body always built up antibodies against everything.
And then in 2014, I found out about bioelectronic medicine via Dr. Tracey’s interview with the Huffington Post.
Although Dr. Tracey was incredibly empathetic and gracious, there wasn’t a trial available for Crohn’s at the time – that would take another three years.
I was hospitalized in 2015, having lost more than 30 pounds in a matter of weeks, with my inflammatory markers through the roof. For a time, I thought I was on my deathbed. I pulled through, but I couldn’t return to teaching.
As of 2017, after having been on everything available for Crohn’s, my rheumatologist said that high doses of Prednisone were the only option ‘from here on out.’
On our way back over the George Washington Bridge, I felt completely defeated. I knew I couldn’t continue to rely on Prednisone… and then somewhere along Route 80, I remembered Dr. Tracey and the Vagus Nerve.
Once we got home, I went to clinicaltrials.gov and sure enough, the clinical trial for Vagus Nerve Stimulation for Crohn’s disease was just posted. I tracked down the email of Ralph Zitnik, the CEO of SetPoint, along with the principal investigator of the trial, Dr. D’Haenz, and told them my story and that I needed this trial. Ralph responded, and said that I would likely be a candidate, but he said ‘sorry, but you’d have to live in Amsterdam for up to 6 months’ in a way that his tone suggested that I wouldn’t do it because of that, because most people probably wouldn’t.
Sean said, “Well, we’re going to Amsterdam then.” We sold our car and anything else that wasn’t nailed to the floor. My family put together a series of both online and in-person fundraisers and raised around $16,000.
The outcome was everything I could hope for. The week prior to surgery, I was in a wheelchair every day. I was in so much pain; my legs were so inflamed, and my entire body constantly ached.
Within a of couple weeks, I was happily and comfortably running from train to train to make it to my appointments.
After returning home, I signed up for the gym and cried tears of joy on the treadmill when I worked my way up to sprinting for 5 minutes straight, and I think I may now be known as ‘that lady that cries at the gym.’
I’m living proof of what happens when collaborations occur in this incredible new field of bioelectronic medicine, and it’s all because of Dr. Kevin J. Tracey of the Feinstein Institutes and his incredible team, as well as SetPoint Medical for executing the clinical trials that are saving lives, and the Academic Medical Center in Amsterdam for taking such wonderful care of me.
Please take time to visit the FAQ & Disclaimer tab, and at your leisure, take a look around the other tabs for tips on navigating disease, the 'Grit Directory', research and advocacy, and more.
Here in the 'Crohn's Fairytale' tab, you'll find blog posts about my story thus far as well as my experiences in advocacy and outreach efforts.
My goal is to work every day to advance access to bioelectronic medicine so millions more can benefit, and continue to advocate for further research. I want to use this website as a platform for patients to become informed on the research happening today that will shape their tomorrow, as well as brighten the outlook on what it means to be a patient and how we can better navigate the journey.
Meanwhile, at work, I'll be advocating for patients by participating in education and outreach with patient foundations and the medical community, as well as working with congress to expand funding, create policy, and expand access.
It's an exciting era we're all watching unfold. Buckle up, buttercups, it's going to be quite a ride. :)