World Turned Upside Down

In the summer of 2014, Julianne L. was an active, healthy teenager, preparing to begin her junior year at North Royalton High School. An accomplished athlete and 4-year varsity starter on the girls’ basketball team, 16-year-old Julianne was looking forward to a bright future, full of promise. Then, without warning, her world was turned upside down.

It was that summer, while away at a travel basketball tournament, when she first noticed blood in her stool and a significant drop in her energy level. A visit to a primary care doctor confirmed she had anemia but no other diagnosis was made. “I was only 16 years old at the time and very nervous,” says Julianne. “I beat around the bush and downplayed my symptoms which probably explains why they couldn’t figure out what was going on with me.”

Her symptoms continued to worsen until, halfway through her senior year, she had to stop playing basketball. “I used to be able to run forever and then I could barely make it up and down the court,” she said. “And, I was starting to have to go to the bathroom more often, and with much more urgency.” In early 2016, at age 18, Julianne saw her first gastroenterologist and was diagnosed with ulcerative colitis, a chronic disease of the large intestine, in which the lining of the colon becomes inflamed and develops open sores (ulcers).

Over the next year, Julianne tried a few anti-inflammatory and biologic medications and dietary changes, but nothing helped. “There weren’t any specific food triggers,” she said. “Everything I ate just came right out of me – even the healthiest foods.” And, she began to lose weight.

In spite of her persistent symptoms, Julianne graduated from high school in 2016 and that fall, like many 18-year-olds, she left her family home to further her education. She attended the University of Cincinnati to study Health Sciences with the ultimate goal of becoming a physical therapist. Throughout those first few months at school, her symptoms continued to worsen. “I was so sick,” she said. “When I wasn’t in class, I would spend all day in my dorm room or the bathroom, crying and calling my mom.” Although Julianne made it through the first semester and returned in January for the spring session, she didn’t last long. “My sister came and picked me up in late January and I never went back,” she said.

Her condition was very serious. At 19 years old, she was hospitalized with extreme fatigue, loose bloody stool, frequent vomiting and countless trips to the bathroom. It was around this time when Julianne turned to UH pediatric gastroenterologist, Jonathan Moses, MD, for help. Over the next two years, Dr. Moses and Julianne worked together to try and manage her disease. “We tried every medical treatment imaginable including anti-inflammatory medications, steroid therapy and clinical trials,” remembers Julianne. “Nothing helped at all.” In January 2019, her symptoms had become so severe and unresponsive to treatment, Dr. Moses referred her to UH colorectal surgeon, Ronald Charles, MD. At age 21, Julianne weighed only 90 pounds when she first consulted with Dr. Charles – dangerously under her normal weight of 130 pounds. It was determined that surgery was her best and only treatment option.

“My first appointment with Dr. Charles was on January 2, 2019,” says Julianne. “I was so nervous I cried almost the entire time. He was amazing though – explaining everything very clearly while consoling me and handing me tissues. I told my mom that I really, really liked this doctor.” Just two weeks later, on January 17, Julianne had the first of three surgeries.

Surgery Number One – January 17, 2019

The first step was to surgically remove Julianne’s colon while preserving the rectum, anus and the anal sphincter muscles. In addition, Dr. Charles performed an ileostomy – the creation of a temporary opening (stoma) in the abdominal wall through which Julianne would eliminate waste while she healed.

Surgery Number Two – August 1, 2019

Six months later, Dr. Charles removed her diseased rectum and performed an ileal pouch anal anastomosis (IPAA). Also known as J-pouch surgery, this is a procedure to restore gastrointestinal continuity in patients who have had their colon and rectum removed. Using tissue from Julianne’s small intestine, he constructed a pouch and attached it to the anus. Ultimately, this would allow Julianne to eliminate waste normally.

Surgery Number Three – Oct 10, 2019

The third and final surgery to close Julianne’s stoma was performed just ten weeks later. Her surgical journey was now complete.

By the end of October, Julianne was fully healed and on the road to resuming a normal life. When asked if she had any dietary or activity restrictions she said, “Not really. I love exercising and going to the gym but I’m learning that some exercises ’feel funny’ so I don’t do them. Right now it’s kind of trial and error but quite honestly, there are very few restrictions. And, best of all, I can now eat and go to the bathroom just like anyone else.”

Epilogue

Although Julianne left University of Cincinnati in January 2017 so she could live at home and try to get her condition under control, that wasn’t the end of her educational journey. That fall she transferred to Cleveland State University (CSU), and, despite missing two semesters during her first three years, graduated summa cum laude with her class in May of 2020 with a Bachelor’s Degree in Health Sciences. Although she originally planned on pursuing physical therapy, and was accepted into CSU’s Doctor of Physical Therapy program, she now aspires to be a physician assistant. Her dream is to work in the field of colorectal surgery one day. “After my surgeries and prior to COVID, I was doing volunteer/observation work at University Hospitals to try to figure out my path,” she says. “Everything I have endured over the years, along with my observational experiences, led me to change my course of study. It’s where my passion lies and that is my ultimate goal.”

Julianne has applied to several physician assistant programs and has had multiple interviews so far, with a couple more coming up. In the meantime, she continues to finish up some classes and is working part time at Dick’s Sporting Goods in a leadership role.

Medically, Julianne is doing great and only has to follow up with Dr. Charles once every two years. She is very thankful to her support network for helping her throughout this journey – “My parents were with me every step of the way. My two sisters, my brother and my friends constantly checked in on me and were there for me. I can’t imagine going through what I did without them.”

When asked about her experience with Dr. Charles, Julianne said, “He is truly amazing and has become a mentor to me. We all absolutely love him. He helped me more than I ever thought possible. My family and I don’t even have the words to describe how thankful we are for him.”

Currently 23 years old, Julianne lives in Broadview Heights with her parents and their two adorable black labs, Stella and Jette.