When Shelly Begue joined the pediatric surgical team as a surgical nurse clinician in 2010 she began to develop an interest in a very specialized patient population – the hospital’s young ostomy patients.
“Ostomies are created for a multitude of reasons,” Shelly said. “Some children are born with defects of the intestine or have congenital conditions like Hirschsprung disease or anal rectal malformations in which the bowel is not working properly. Crohn’s disease and ulcerative colitis are diseases of the bowel that sometimes result in the need for a temporary or permanent ostomy.”
An ostomy, which is a surgically created connection of the intestine to the abdominal wall, allows the body to eliminate waste products or stool to the skin’s surface. A colostomy connects the colon to the abdominal wall, while an ileostomy connects the last part of the small intestine (ileum) to the abdominal wall. Babies as young as 1 day old can undergo an ostomy.
“Historically, the hospital had contracted with an outside agency for our patients’ ostomy needs,” she said. “While this was adequate, there were many limitations. With the recent retirement of Sally Thompson, the hospital’s longtime enterostomal therapist, I saw an opportunity to create a hospital-based program.”
Nick Hurst, 20, who has suffered from Crohn’s disease since he was 16, underwent an ostomy at age 18 and worked firsthand with Shelly.
“I had exhausted all my treatment options,” said Nick, who was using the bathroom between 10-12 times a day pre-surgery. “My quality of life was suffering. I was in college and would have to take a ton of Imodium to get through my days.”
A patient of pediatric gastroenterologist Dr. Matthew Wyneski, Nick says his Crohn’s came on suddenly when he woke up in December 2015 passing blood.
“My parents took me to the emergency department,” he said. “Eventually I was referred to Dr. Wyneski when I started losing weight and my primary care doctor noticed spots on my throat. An endoscopy and colonoscopy confirmed I had Crohn’s.”
Nick said the decision to move forward with an ostomy wasn’t a difficult one for him.
“We had tried many different medications and none of them were working,” he said. “I just wanted to be able to live my life without having to worry about having a bathroom in sight at all times.”
Shelly says establishing a pediatric certified ostomy care nurse (COCN) within the hospital provides patients and nursing staff daily access for ostomy site concerns, pre-operative and post-operative education and ostomy supply needs.
“Being a member of the WOCN (Wound, Ostomy and Continence Nurses) society allows me to stay current on best practices, provide staff education and evidence based care, and assist with product evaluation,” she said.
Nick worked with Shelly when he had his colon and 16 centimeters of his small intestine removed in March 2018. She helped him learn how to put on and change bags and also pointed him in the direction of support services. Although he still has 6 inches of his colon left, Nick says he has no plans to reverse the ileostomy anytime soon.
“The pros far outweigh the cons for me,” he said.
Some of those cons include occasional redness at the stoma site, weird noises that he can’t control and having to sleep semi-upright so that gravity doesn’t pull his ostomy bag in the wrong direction causing it to leak.
“Although I have no control of when things output, I have a sense of when it’s happening because you can feel it get heavier or inflated with gas,” he said.
Nick empties his pouch approximately 4 times a day, but only needs to change it once a week. He says he is careful not to eat large nuts and seeds which can be hard to digest. The pouch is discreetly located under his clothes or can be tucked in a waterproof Stealth Belt for swimming. Nick also has regular belts for everyday wear.
Shelly regularly meets with patients, like Nick, and their families pre-operatively to explain the procedure and educate them about stoma management.
“I provide pre-operative stoma marking to assist the surgeons with optimal stoma placement to help provide the best fit and hopefully reduce the frequency of pouch changes,” she said.
Shelly says she knew having a hospital-employed certified ostomy nurse would give Akron Children’s patients increased continuity of care.
“Ostomy patients deal with emotionally challenging changes in body image after surgery,” she said. “In addition to providing specialized care and support, I can show them they can live a normal life and connect them with support groups which provide a wealth of information.”
Nick says there are a number of online communities available for people who are looking for support.
“I have done quite well, but it’s nice knowing these communities exist,” he said. “The fact of the matter is I still have Crohn’s disease and I take medication to manage it. Having the ileostomy doesn’t take that away, but it makes my quality of life so much better.”
Though her new role has its challenges, Shelly says the rewards make it all worthwhile.
“My job requires patience and persistence, but when you have made an impact in improving someone’s quality of life the rewards are awesome,” she said.