Bringing Ostomy Patients Together
Congressional District: PA15
Gastrointestinal Disease, Immune Disease
Issues and Challenges
Jess Wofford has encountered: Copay Issues, Insurance Issues, Disability, Invisible Illness, Transparency in Health Care
June 2007 after a multitude of testing, I was told I had a type of Inflammatory Bowel Disease (IBD) called Crohn’s Disease. I immediately burst into tears. The first thing that came out of my mouth “Am I going to die?” As a 14 year old, I was absolutely terrified. My family and I had not heard of this disease and there was so much to learn about this still incurable disease.
I spent that whole summer in and out of the hospital after trying and failing different medications/medication combinations. Constant abdominal pain, many trips to the bathroom daily remained unchanged with each medication change. Crohn’s medications have come a long way since then, but back in 2007, when all else failed, Remicade was gold. So, I was started on Remicade infusions every 8 weeks.
Growing up, I always wanted to be a music teacher. Music was, and still is, everything. But, through all of those hospitalizations, I knew one thing was for sure: I was going to be a nurse. I wanted my career to be helping people at their worst and to be as kind and compassionate as my inpatient nurses were to me when I was diagnosed.
As the years went on, Remicade was gold for me. I would miss high school/college classes one day every 8 weeks for my infusions. I am extremely fortunate to have amazing friends, family, and teachers by my side. I remember telling my friends in school that I would not be here the next day due to my infusions. “Wow, it’s been 2 months already?!?” they would always say. I have never been the type of person to keep my disease to myself. I love when teachers or kids I went to school with would ask why I wouldn’t be in school. I would tell them about Crohn’s Disease and explain how my infusions. I always loved educating others about my disease and my treatment, even from the very beginning of my diagnosis.
All through college, I knew nursing was the right path for me. Nursing reminded me a lot about my disease: challenging and information is always changing and updating. College was not all smooth sailing. The anxiety and stress caused my Crohn’s to flare up. I had to drop out of a couple classes because of short hospitalizations and missing classes. I had shingles, infection in one kidney, and a stone in the other kidney all diagnosed within a few weeks of each other. Despite these setbacks, I ended up graduating on time with my Bachelor’s in Nursing. I even got to walk across the stage with my sister, so we got to graduate together! That will always be one of the highlights of my life.
After 10 years on Remicade, my luck ran out. I began to have constant abdominal pain, little to no appetite, 15 trips to the bathroom a day, eczema behind my ears and on both nostrils. I began to worry as these symptoms were very similar to when I was diagnosed. From March 2018 to end of 2018, I was in and out of the hospital. I felt like I was back at the very beginning of my diagnosis: I was switched to multiple different medications with no improvement of my symptoms. I was down over 40 pounds and was placed on TPN for 2 months with just a liquid diet. My quality of life was awful. “normal” was so far from me at this point.
So, on May 1, 2019 I had my entire colon removed and had an ileostomy created. At this time I learned that I now had two disabilities: Crohn's Disease and an ileostomy. I was not aware that either was considered a disability. But, regardless, I was more than ready to get my life back despite these disabilities.
After my surgery, I went back to life as it was. My husband taught me how to ski, I swam in pools and the ocean, went on vacations, went to family events. I could not even imagine doing all these things when I was sick. My ostomy truly gave me my life back. Ostomies come with their own set of challenges: always making sure you travel with enough extra supplies, not overdoing it with strenuous activity. I have had my bag leak while sleeping and while out in public. This can feel so humiliating and can honestly make you feel hopeless sometimes. Choosing clothes to wear can even be challenging sometimes. I feel like there are clothes I want to wear that I just don’t like how it outlines my ostomy bag.
But, with every bad situation, always comes good. My sister makes me amazing ostomy bag covers. I have bag covers for all occasions, as I wear my ostomy on the outside of my pants. I have also found some amazing brands of ostomy clothing (shout out to Aurora Jeans and Vanilla Blush!) My family has been so incredibly supportive through this whole process. I will always be thankful and grateful how my family and friends have been by my side through this journey.
Now, I work as an IBD nurse and help patients with Crohn’s Disease and Ulcerative Colitis navigate the healthcare system and help get their medications approved by insurance. I love helping my patients, but dealing with insurance companies can be extremely discouraging. Step therapy is a legislation that I have personally seen hurt my patients. I want to use my personal and professional experiences to change this.
My job has also given me a front row seat to all the advance in IBD. I attend conferences and dinners to discuss the latest medications/testing/patient programs. I am so thankful to be involved in the healthcare professional side of the IBD world along with being an IBD patient.
I hope to use my voice and experience to help others like me. Not every day is easy, but life can still be amazingly beautiful
My Motivation and Inspiration
Help patients that have IBD and/or an ostomy make connections with others that have this diagnosis. Life with IBD and/or an ostomy can be challenging, but I want people to have the support to continue to be themselves and live their lives.
Make sure that every person addresses their mental health needs. Having an ostomy and IBD can be as much mentally challenging as it can be physically challenging. This is an aspect I wish would have been discussed with me and addressed when I was diagnosed.
Advocate for people with disabilities to help break the stigma of the word disability. Disabilities can be visible and not visible. Patients should not have to feel ashamed for having a disability.
Step Therapy is harmful. Trained medical professionals prescribe medications for a specific purpose. Our care should not be decided by insurance companies, but instead by our medical professionals.
Use my unique perspective of being both an IBD patient and an IBD nurse to help patients and healthcare professionals understand each other viewpoints/concerns/frustrations