Coping | Daily Life | IBD
It all started right around graduation from high school: a sudden increase in frequency of going to the bathroom, combined with seeing blood in my stool, led me to tell my mom something may be up. Quickly, I was taken to my primary care doctor, then a gastroenterologist, and after bloodwork and a scope, was given the diagnosis of ulcerative colitis. Not everyone is diagnosed that quickly. It took me years to find a good GI who I liked and was competent in managing my care. I now have had IBD for as long as I lived without the diagnosis. It seems like forever ago that my life didn’t revolve around this illness, but I am grateful for those 18 years of healthy bliss.
My IBD journey has been full of twists and turns. I spent about a year on steroids, and unsuccessfully threw every medication possible at my first flare. It was freshman year of college that I got asked daily, “So when did you get your wisdom teeth out?” because I had the constant side effect of moonface from Prednisone. After failing every medication on the market for IBD at the time, I had three surgeries to get a J-pouch. This would “cure” my ulcerative colitis and let me live a normal life, or so they promised. Soon after my J-pouch was created, I began to get chronic pouchitis, which was the first red flag. Then the discovery of an abscess and fistula changed my diagnosis from ulcerative colitis to Crohn’s disease. This was the biggest psychological hurdle for me to overcome, as I had to switch from “cured because of my J-pouch” to “lifelong Crohn’s patient” mentally. (Cue the need for a therapist with IBD expertise.) I then spent years and years on biologics with a weakened immune system (yay MRSA and random infections!), but they seemed to buy me some time and keep things at bay. Once biologics failed, I got a temporary ostomy to get the fistula and diseased J-pouch diverted to calm down. This lasted for about 5 years. Slowly, as my quality of life tanked, it became clear that it was time to get my J-pouch removed and a permanent ostomy placed in order be healthy.
Like I said, I’ve been all over the place. I’m hoping for less excitement now that I have the permanent ostomy and no real places left for perianal Crohn’s to wreak havoc. As I wait for wounds to heal and normal life to resume, I was asked to share my story of how I got into counseling those with IBD.
I always have been interested in psychology and how the mind/body interaction works. Much to my dismay and my parents’ encouragement, I got a psych minor in undergrad and went with an education major. Soon after burning out as a special education teacher in the Chicago Public Schools, I decided to explore a new career. As an IBD patient, I was seeing an incredible health psychologist at the time, and found it so helpful that I asked her what schooling I needed to do something similar. After figuring out that I wanted to focus on direct clinical work with patients rather than teaching or research, I enrolled in a master’s degree in social work program at Loyola University Chicago.
During my master’s program, I took as many classes as I could in my health specialization to dive into the field of health psychology and learn about chronic illness. I crafted an independent study course on chronic illness therapy so that I could meet those in the field doing the work I wanted to do someday. The more I learned, the more I wanted to learn. I decided to volunteer at Camp Oasis, a camp for kids with IBD. There I met my future business partner, Tiffany Taft. We hit it off and realized there was a definite need for more therapists with IBD-specific training. We dreamed of building a private practice, but put it on hold for a bit while we both tended to life.
I finished my master’s program and was hired at the outpatient oncology center where I did my second-year internship. I worked there for six years. As I counseled adults with cancer, I learned that working in oncology every day was just too heavy for me as a therapist. I realized I wanted to focus more on chronic illness rather than terminal illnesses and that I wanted to see kids as well as adults. Starting a private practice in 2012 allowed me to begin to build a caseload of clients who could benefit from my IBD expertise and training. Six years into our practice, we are closed to any non-chronic illness patients and have another health psychologist who joined us last year. Since the demand for a chronic illness therapist is high, we have a long wait list and are looking for another therapist to join our practice. This July I am venturing out on my own and starting a new private practice in Evanston, Illinois called Chronic Illness Psychotherapy.
The best part—but also the hardest part—of my job is that I truly understand a lot of what my clients go through. It’s hard not to take that burden home with me, especially when it comes to seeing how much my pediatric clients have to deal with. It makes me thankful I had a relatively healthy childhood. It is also incredibly rewarding to provide a safe space for those who are struggling with something medical, as I remember how helpful this was to me as a newly diagnosed teenager. It’s a privilege to walk with clients as they try and figure out how to live as fully as they can with a disease that can rob them of joy and opportunity. It is truly rewarding to give those with IBD a place where they can bring all their fears, emotions, thoughts about their illness, and be able teach them tools so they feel more equipped to managed their disease.
In the last six months, I have had to take a step back to deal with my own health. I was honored to speak at the GWG Chicago conference in September, but two weeks later in October, I had a liver abscess which turned into septic shock. Unexpectedly, I had to spend two months off work. Then this January, I had APR/Barbie butt surgery, and I dedicated February and March to recovery. This year has been the most challenging medically, yet I have seen the amazing power of my body healing itself. I have seen how resilient my body and mind are, and I am amazed at how humans are wired to overcome adversity. I continue to work with my own therapist to sift through medical trauma and all it brings and to learn lessons I want to pass on to my clients. In the future I hope to offer counseling to those with PTSD from chronic illness as well as clients who have body image/eating issues surrounding IBD.
I am very thankful for the community that Girls with Guts has created and honored that they asked me to contribute to their series for Mental Health Awareness Month. Thanks for taking the time to read a little about my personal and professional journey, and please reach out anytime!
Stephanie Horgan Brenner is a newlywed and permanent ostomate who lives in Chicago with her husband and cat. She is a Licensed Clinical Social Worker with over nine years of experience working with people living with chronic and terminal illness. Stephanie is a proud auntie to her nieces and nephews, and enjoys comedies, being crafty, and walking daily in the park near her place.