When Arizona Martinez walked into her recent gastrointestinal checkup appointment, her doctor couldn’t contain her surprise over what Arizona was wearing.
“Is that an x-ray on your T-shirt?” asked Rachel Herdes, DO, a pediatric gastroenterologist with the Intestinal Rehabilitation and Nutrition Support program at Stanford Medicine Children’s Health.
Arizona, age 20, proudly answered yes. In fact, it was her latest chest x-ray that she had turned into art and screen-printed onto T-shirts, which she sold to family and friends. It showed physical vulnerabilities, such as a central line (a long-term IV) and dilated intestines as a result of her short bowel syndrome (missing/shortened small intestine), also called short gut syndrome.
For Dr. Herdes and Melissa Seely, RN, it marked an important transition for Arizona—between adolescence and adulthood, but also between struggle and acceptance of her chronic disease.
“It was fun to see Arizona so enthusiastic,” Dr. Herdes says. “Her short bowel syndrome, which is a chronic medical disease, has been such a prominent part of her life, so for her to be able to make it into art shows how comfortable she has become in her own skin.”
Overcoming a rough start and embracing lifelong care
Accepting her short bowel syndrome and intestinal failure (intestines that can’t absorb enough nutrients and hydration to maintain adequate growth) means accepting that she may always need parenteral nutrition, which requires spending several hours every day hooked up to a machine to receive liquid nutrition through a central line that goes straight into her bloodstream, bypassing her intestines. She can still get some nutrients through eating, but not enough to sustain her.
Getting off total parenteral nutrition (TPN) was the goal of Arizona and her mother ever since she was born with gastroschisis, a condition where her intestines grew outside her body during fetal development. “Doctors told my mom I wouldn’t live, and they definitely didn’t imagine I would see my 21st birthday,” Arizona says.
As an infant, she underwent surgeries to save the healthy part of her intestines and put them back inside, but unfortunately her intestines never regained normal function. Soon after, her mom transferred her to Stanford Children’s. Arizona has been a patient of the Intestinal Rehabilitation and Nutrition Support program at Stanford Children’s ever since. It’s one of a few intestinal rehabilitation programs on the West Coast, and it offers highly specialized, multidisciplinary care for children with a wide range of complex nutritional conditions.
The goal of intestinal rehabilitation is to maximize function, optimize nutrient absorption, and, whenever possible, free children from TPN through innovation, like exploring ways to lengthen remaining intestines and improve absorption. Yet, getting children completely off of TPN is not always possible.
“Arizona’s underlying diagnosis has made it challenging to absorb nutrients. For that reason, she currently requires daily TPN, but we were able to decrease her infusion time to run overnight, helping her to be able to live the life she wants during the day,” Dr. Herdes says.
Living a full life despite TPN
Now that Arizona is hooked up to TPN mostly while she sleeps, she has time during the day to fully embrace life and work toward becoming who she wants to be—a writer, an artist, and an inspiration to others. Through her art and words, she strives to show the world a glimpse of what it’s like to walk in her shoes. Her ultimate hope is to help others with disabilities overcome a sense of loneliness and, at times, cruelty—things she herself experienced growing up. In high school, she had to receive TPN in the classroom and endure gawks and comments as her machine whooshed and beeped.
“In the hospital, I started making art and writing in a journal to heal my pain,” Arizona says. It’s a habit that stuck. Today, Arizona writes stories, keeps a journal, and puts together mixed-media collages. She has a steady job, and she is studying creative writing at Mission College in Santa Clara, California. She plans to write a memoir one day, telling her story to give others with short bowel hope and support.
“I want to tell my story so people with short bowel know they are not alone and that they can live a full life on TPN,” she says.
Recently, Arizona decided to put herself out there on social media. She posted her x-ray T-shirt and shared her art, which portrays the pain of feeling different, and she was overwhelmed by the positive responses she received.
“I couldn’t believe that people liked my art and were inspired by it. At an art show, I told a woman the story behind one of my pieces, and she thought it was so beautiful that she bought it. I was shocked!” Arizona says.
Arizona was invited to show her art at her college and at her favorite tattoo shop. Many friends and acquaintances bought her x-ray T-shirt. “It’s mind-blowing to me that people are wearing something I was taught to feel so insecure about,” Arizona says.
Owning her chronic disease
As a teenager, Arizona rebelled against her condition and all it required—something that’s quite common in adolescents with chronic diseases. She was becoming thin and malnourished, and her providers were concerned.
“Arizona simply didn’t want to be sick anymore. She just wanted to live a normal teenage life,” Seely says. “Yet, she has really stepped up, and it has been beautiful to watch.”
Today, Arizona completely handles her rigorous care requirements on her own: ordering her TPN formula weekly from the Children’s Home Pharmacy (which specializes in specific TPN for her needs and thankfully delivers right to her home), connecting her central line, changing dressings, taking medications, and returning to the hospital every two to three months for checkups.
“When I was younger, I really hoped I would get off of TPN, but I have let that go as an adult,” Arizona says. “Now that TPN is just 12 hours a day, I can plan my life better.”
Arizona appreciates that the Intestinal Rehabilitation and Nutrition Support program at Stanford Children’s has allowed her to stay on as an adult. The program cares for about 150 patients from ages 2 to 29 years old.
By proudly wearing her chest x-ray T-shirt, Arizona is showing the world that yes, she’s different, and no, that’s not a bad thing. It’s actually something that makes her wonderfully unique.
