I had seen some things about the Patient Coaches Program on social media, but was never completely sure what it really was. It wasn’t until I started talking to another Patient Coach, Ryan, that I began to understand the mission behind 11 Health and what the company was all about. Ryan has continuously been a person, and friend, in the IBD and ostomy community whom I really trust. While it usually takes some time for me to distinguish between reputable, patient-centric companies and those that may have a different agenda, Ryan’s “referral” caused me to look into 11 Health more and then reach out to schedule an interview.
I was diagnosed with Ulcerative Colitis at the age of 13. I was experiencing frequent diarrhea, stomach pain, fatigue, and decreased appetite. I was a competitive swimmer at the time and was supposed to attend a national swim meet that required travel. Because of this, my mom made an appointment with a local GI, so I could hopefully get checked out and be on my way to join my teammates. During the office visit, the doctor performed a rectal exam which showed some blood. I then had a colonoscopy, which is when I was diagnosed with UC.
To make a very long story short, over my 19 years of living with IBD, I have gone through 15 open abdominal surgeries, tons of complications including fistulas, abscesses, wound infections, sepsis, loads of obstructions, etc. I have also lived with a J-pouch, multiple Kock pouches, a loop ileostomy and now have an end ileostomy. My first ostomy was when I was 16 and the second was at the age of 24.
While it has been an incredibly rough road for me, advocating for those with chronic conditions has given me a purpose. It has taken all of the terrible things I have had to go through in my life and allowed me to give back to those struggling with similar challenges.
As a Patient Coach, I hope to help show those of you going through this life-changing operation that you are not alone. I kept everything I was going through hidden for over 12 years. I want to show any of the patients I have the pleasure of working with that there is a family behind them. I hope all of my patients know that I get it and there isn’t a thought, or fear, they’ve experienced that I haven’t either had myself or can understand 100%.
I am not a tough-love Patient Coach. I believe everyone does what they can handle, when they can handle it. While I hope to inspire, offer tips, share my experiences, be a friend and someone my patients can confide in, I will always respect his/her desire to figure out this journey on his/her own time table.
One piece of advice I would give a new ostomate is to be gentle with yourself. You are going through something traumatic, so allow yourself time to grieve and heal. When you are ready, surround yourself with people who understand (like us)!