Novel Surgical Procedure Helps Olivia Avoid Intestinal Transplant and Enjoy Her Life Again

In her early 20s, at an age when most young adults are busy exploring their expanding worlds, Olivia DeKold found hers becoming smaller and smaller.

Although she’d been living with a chronic condition called intestinal pseudoobstruction, or intestinal failure, since she was 2 years old, her symptoms from the motility disorder—including nausea, vomiting, stomach distention and pain—had been manageable. Right around the time she graduated from high school and was starting college, though, Olivia began noticing warning signs that something was wrong.

“That’s the way my disease works,” she said. “It’s hardly ever like one minute you’re OK and the next you’re in a lot of pain. It creeps up on you.”

Olivia began vomiting more than usual and noticing severe pain around her stoma, which is an opening in the abdomen created by doctors to remove waste from the body. By late 2022, Olivia had become so uncomfortable that she rarely left the house. 

“I was so miserable,” she said. “Every time I ate, I threw up. The only thing I was doing was lying in bed. I told my doctor it might be time for a transplant.”

A Non-Transplant Surgical Option

Olivia had been a patient at Cincinnati Children’s since her diagnosis. Her doctor, Samuel Kocoshis, MD—medical director of the Intestinal Transplant Program—had always considered a complete intestinal transplant as only a last resort.

Patients like Olivia, along with others who have conditions that significantly affect their digestive system cannot eat or drink enough to survive so they rely on intravenous nutrition (total parenteral nutrition, or TPN), to get their required nutrients.

However, when patients are on TPN for a long period of time, they risk developing advanced liver disease or running out of available veins to place a central line, which supports TPN. At that point, doctors typically recommend an intestinal transplant as the last treatment option, but transplants come with their own set of risks, most related to rejection and infection due to the immunosuppression. 

Because of those risks, Dr. Kocoshis asked his colleague Paul Wales, MD, MSc, surgical director of the Intestinal Rehabilitation Center, to evaluate Olivia. 

“In talking with Olivia, it quickly became clear that she didn’t fit the standard criteria of someone who needed a bowel transplant,” Dr. Wales said. “Her major complaint revolved around pain, and reduced quality of life. That’s why I proposed another option.”

Nothing to Lose, Everything to Gain

What Dr. Wales suggested, and Olivia agreed to try, was a surgical procedure that was relatively new and rarely performed. It would reduce both the size of her bowel and the length of her intestine to help prevent her obstructive symptoms. Dr. Wales had performed the operation on a few of his patients and found their quality of life drastically improved.

“The surgery is less invasive than a transplant, and it would help her avoid the lifelong immunosuppression that goes along with having a transplant,” Dr. Wales said. “It also wouldn’t prevent her from being able to receive a transplant in the future, if she ultimately needed one, so we wouldn’t burn any bridges by trying it.”

Julie Schletker, MSN, APRN, a nurse practitioner in the Intestinal Rehabilitation Center, noted the change in tone when the conversation switched from considering transplant surgery to the procedure Dr. Wales proposed.

“Olivia came in and wasn’t doing great,” Schletker said. “She had this lack of optimism. She felt like she’d done all the things she could to improve the quality of life she had. You could tell she was hopeful the surgery Dr. Wales talked about would help.”

Surgery took place in March 2023. During her three-week recovery in the hospital, Olivia always had a smile on her face, Schletker said: “Even though you knew she wasn’t feeling well, she was always cheery and always ready to participate in her care. She asked questions about when she could go back to work and start doing things she enjoyed.”

‘I’ve Never Felt Better in My Entire Life’

Soon enough, Olivia was able to do both. In fact, once she returned to her home in Elizabeth, IN, she started backpacking and camping again—two of her favorite activities. 

“I’ve never felt better in my entire life and have been able to do so much,” Olivia said, noting she’s now working again, finishing her last semester of college, and planning a move out west to work and explore for “a little bit” before going to graduate school to become a teacher.

For her providers, the difference in Olivia pre- and post-surgery was easy to see.

“She went from not having much quality of life at all to being back at school, working again, hanging out with her friends and doing everything a young adult should,” Dr. Wales said. “She is a remarkable person who has endured a tremendous amount, so I am thrilled she is feeling better.”

Marilyn Stoops, MSN, APRN, another nurse practitioner in the Intestinal Rehabilitation Center, said: "She's been dealing with this for a really long time. She's amazing at taking everything in stride, and it's so neat listening to her talk about everyday things like school, work and graduating. You can tell her condition is an enormous part of who she is, and it's made her who she is, but it doesn't define her."

Olivia gives a lot of credit to her provider team.

“I’m so lucky to have found Cincinnati Children’s when I was young,” she said. “I’ve had the same team since I was 2 years old. They care about me in a way that other providers wouldn’t. They’ve seen me grow up.”

Dr. Wales points to the benefits of having a comprehensive care team.

“There is a lot of data out there about how much patients’ outcomes are improved when they’re managed by an experienced, multidisciplinary intestinal rehab program,” he said. “Olivia’s story is a testament to that. We have the experience to push the envelope in a way that’s thoughtful without being reckless, so we can really improve people’s lives, even young adults who often have nowhere else to go because they’ve aged out of pediatric care.”

(Published January 2024)