Crohn's disease knocked Sabrina down — now she's kicking it

“I thought it was probably her appendix,” said Sabrina’s mom, Tammy Bernhard of Lomira, Wis. “We took her to the emergency room in Fond du Lac, about 15 miles away, and they did an appendectomy.”

It seemed like all was fine, but just three days later, Sabrina woke up with a fever. After going back to the hospital, things started to slowly spiral downward. The pathology report on Sabrina’s appendix suggested she had Crohn’s disease — an incurable, often debilitating inflammatory bowel disease of the digestive tract that can cause intense pain, fatigue, weight loss and malnutrition. Confirmation of Crohn’s disease came very quickly.

After doctors in Fond du Lac consulted with UW Health pediatric gastroenterologist Dan O’Connell, Sabrina was transported to American Family Children’s Hospital in Madison, where she was found to have an abdominal abscess — a pocket of infected fluid — that was causing severe pain.

Infected fluids were drained

A procedure was performed the next day to drain the infected fluid out of Sabrina's abdomen — a step to prevent contamination of her bloodstream. Drains were inserted to keep the fluid flowing out of her body.

After a two-week stay in the hospital, Sabrina went home. While she was skittish about it at first, Tammy was trained how to empty and clean the drains and intravenous tubes that her daughter needed to keep infected fluid moving out of her body.

“She had to go everywhere with the drains and I.V. tubes," Tammy said. "Fortunately, her clothes hid the tubing, but we had to be very careful that she didn’t bump into things or let the lines catch on something."

Once the infection was under control, Dr. O'Connell began treating Sabrina with Humira, a powerful biologic drug for patients with severe Crohn’s disease that is given via self injection.

Sadly, over the first half of 2017, Sabrina experienced repeated abdominal flare-ups and the Bernhards got to know every bump in the road between Lomira and Madison as they made several multiple-day trips to American Family Children’s Hospital.

“When Sabrina got hit with severe stomach pain, we drove her straight to Madison,” Tammy said. “Her intestine would get highly inflamed, leading to bowel obstructions. She was hospitalized several times over six months, with each stay lasting about four or five days.”

Worst pain ever was scary

As debilitating as her condition was, nothing matched the pain Sabrina suffered one day in July 2017.

"She couldn’t walk or even get in the car," Tammy said. "One ambulance drove her part way to Madison and then another intercepted and took her the rest of the way. It was very scary."

At the hospital, doctors saw signs of a developing fistula, or tunnel that can form between organs that are normally not connected. Sabrina also had a stricture or narrowing of her large intestine that prevented waste from getting through.

"Sabrina could not eat anything through her mouth," Tammy said. "All her nutrition was given intravenously. Her quality of life was not good."

Finally, after one more trip home and back, Sabrina's medical team agreed the time had come for more aggressive treatment — specifically surgery.  

Dr. O’Connell and the pediatric gastroenterology team consulted with Evie Carchman, MD, a UW Health colorectal surgeon, and surgery was scheduled for late July.

Surgery removed piece of bowel

“We removed the affected loop of Sabrina’s bowel and then reconnected the two normal ends," Dr. Carchman said. “She has plenty of bowel remaining to live a normal life while her Crohn’s disease is managed with medication.”

As she reflects on her inpatient stays, Sabrina’s memories of American Family Children’s Hospital are far from unpleasant.

“They kept me busy enough with visits to the outdoor hospital healing garden or Child Life staff letting me shoot paint through a syringe at UW Badger football and hockey players,” Sabrina said. “I didn’t spend lots of time pitying myself."

Fortunately, Sabrina has done very well for the past 2½ years, with no flare-ups or hospitalizations.

Now 16 and a high school junior, Sabrina — like many children who spend a lot of time in the hospital — has matured well beyond her years.

Experience might impact career choice

“Teenagers are so self-conscious about almost anything, but this experience helped Sabrina really appreciate what matters in life," Tammy said. "She missed a lot of school and social events when she wasn’t feeling well, but is extremely appreciative of the care she received – so much so that she – and her older sister, Samantha – are thinking of pursuing a career in the healthcare field."

Dr. O’Connell, who sees many children and teens limited by gastrointestinal distress, is thrilled to see Sabrina active in school activities such as volleyball, track, pep band and yearbook.

“When you have seen someone like Sabrina at their low point, it is very satisfying to help them achieve a more normal quality of life," he says. "Our goal is to help these kids pursue the same kinds of travel, college or career plans as their friends without disease. Moreover, Sabrina’s recovery has no doubt been fueled by a highly engaged and supportive family, which means everything in these situations."