Mark is a happy middle schooler who likes playing basketball and hanging out with friends. However, an intestinal condition once prevented him from enjoying these everyday activities. Mark’s parents, Jessica and Mitch, had spent years searching for a solution that would improve their son’s quality of life before finally finding the answers and support they were looking for at Children’s Health℠.
The long search for an answer
When he was just a toddler beginning to potty-train, Mark started experiencing difficulties during bowel movements. His pediatrician referred Jessica and Mitch to a pediatric gastroenterologist in Lubbock, near their hometown of Plainview. The specialist determined that Mark suffered from fecal incontinence and severe constipation, and started him on a treatment regimen involving dietary changes, exercises and medication – all without great results.
“Even with all the treatment, Mark continued to experience abdominal pain and nausea,” says Jessica. “We had to wake him up before 6 a.m. every morning to insert a catheter into his belly button to flush out his colon to enable him to have a bowel movement.”
As his issues continued, Mark was referred to a pediatric hospital in Fort Worth. There, specialists suggested he have a cecostomy, in which a permanent opening would be made in his abdomen. This would allow a thin tube to be inserted directly into his colon to give easier access to administer his daily irrigation treatments. The family decided it would make the most sense for Mark to have the procedure done back in Lubbock, so they returned home for surgery.
Surgery went well, but for the next couple of years, there were still no significant improvements in Mark’s condition – and the family still had many unanswered questions.
“A brand new day”
Jessica began researching other options for her son on her own and came across Rina Sanghavi, M.D., Director of the Neurogastroenterology and GI Motility Program at Children’s Health and Assistant Professor at UT Southwestern.
“What really stood out to me about Dr. Sanghavi was her interest and research into how chronic constipation affected a patient’s quality of life,” says Jessica.
Unfortunately, it was a topic Mark knew all too well as his condition had already held him back from many “normal” childhood experiences like attending sleepovers, going to summer camp and even playing sports.
As his mom Jessica puts it, “His condition wasn’t life-threatening, but it certainly was life-altering – and it had the potential to negatively affect his future.”
After speaking with Mark’s pediatrician, the family decided to make the six-hour trip to Dallas to see if Dr. Sanghavi could help.
“Within minutes of meeting Dr. Sanghavi, we had such confidence that we were actually going to get somewhere to help Mark,” says Mitch. “I remember her telling us that if she couldn’t help Mark, she wouldn’t stop until we found someone who could. We realized then and there that it was a brand new day for our son.”
Testing a solution
Dr. Sanghavi and her team ran tests and performed an endoscopy to figure out the root cause of Mark’s issues. Ultimately, the tests showed that Mark was lactase deficient and that his colon was inflamed from C. diff.
“Though they couldn’t determine for certain that these issues were the complete cause of Mark’s problems, we knew they were significant contributing factors,” says Jessica.
After treating the infection, Dr. Sanghavi also discovered that the nerves and muscles in Mark’s colon did not function without the presence of a certain medication. The family began adding that medication to his daily flushes, and it immediately made a huge difference.
“Since then, we’ve been able to cut back on the frequency of his daily flushes and even reduce the amount of solution we’re using,” says Jessica.
“For years, Mark was unable to make progress – and that can be frustrating for a patient and their family,” says Dr. Sanghavi. “Since working with him, it’s been extremely rewarding to see such improvements in his quality of life.”
Today, just over a year after his first appointment at Children’s Health, Mark is like a completely different kid. He’s playing on his school’s basketball team, enjoying sleepovers with his friends and even attended summer camp with his church this past year with plans to go again this summer.
“Since he has gained more control over his health and medical issues, his self-esteem has improved, and he’s doing things he never would have done, even just a year ago,” says Jessica.
That includes climbing a 30-foot-tall pole to walk across a wire during a high ropes course at summer camp and riding a zip line during a family vacation – two things his dad never thought he’d see him do because of a longstanding fear of heights.
“It’s great to see that he’s gained a confidence to branch out and try new things he was previously afraid of,” says Mitch.
Mark will most likely need to remain on oral medication for the rest of his life, but both he and Dr. Sanghavi are optimistic that they’ll be able to reverse his cecostomy in the near future – a day he and his family are very excited about.
“Mark has changed so much over the past year,” says Jessica. “We’ve seen such improvements in his overall health and quality of life and are so grateful for the difference Children’s has made in his life.”
Note: For privacy, the family’s names been changed in this story.
Ranked among the top programs in the nation, the Center for Pediatric Gastrointestinal Motility at Children’s Health works to help children overcome a variety of digestive conditions. Learn more about our program and services.