The show must go on: Teen overcomes motility disorder

teen recovers from motility disorder

In October 2016, we were spending a weekend in Minnesota for a family wedding. Little did we know we would be there longer than expected!

During the rehearsal dinner, my 16-year-old daughter Sophie said she wasn’t hungry — a surprise because it had been a long day of travel and the rest of us were starving. She managed to force down some food but seemed lethargic and not herself. She later confessed that she had been feeling sick all day.

Back at the hotel, I had just drifted off to sleep when my other daughter called me from their room. She said Sophie was sick and crying. I ran down the hall and when I saw her, I just knew something was wrong. My instincts said get to the ER right away.

We went to the closest hospital to our hotel, but after X-rays and blood tests, the doctor couldn’t find anything wrong and sent us home. They told us to pick up a stack of treatments, including enemas, a laxative drink, and an array of pain medications. We went back to the hotel to try everything they suggested, to no avail. In fact, Sophie began vomiting, hunched over in agony.

A medical emergency far from home

When we returned to the ER, a CT scan showed that her sigmoid colon was completely twisted — a problem called sigmoid volvulus that can create an obstruction and cut off blood supply to the area, potentially destroying the tissue. She was transferred to the local children’s hospital, where surgeons performed an emergency procedure to untwist Sophie’s colon.

The procedure was a success, but they warned us that she would need future surgery to permanently address the problem. Before we left to fly home, the surgeons referred us to Dr. Samuel Nurko in the Motility and Functional Gastrointestinal Disorders Center at Boston Children’s Hospital.

Thankfully, he was able to see Sophie very quickly due to the severity and urgency of her case. He told us that the only solution was to remove a large piece of her sigmoid colon so it no longer caused problems. He recommended that she undergo surgery by his colleague Dr. Belinda Dickie in the hospital’s Colorectal and Pelvic Malformation Center as soon as possible.

But there was a hitch.

Sophie was starring in her high school play that fall, and 40 other kids were relying on her as the lead. If she dropped out to have surgery, the show would be canceled. She felt responsible and guilty. Then, just a week before opening night, her symptoms returned. Amazingly, she made it through the play — and then we headed to Boston’s Children’s, where we would spend the next nine days.

motility disorders

Moving past a motility disorder

Extensive testing revealed that Sophie had an excessive amount of colon, a large portion of which had no motility at all. We still aren’t sure what caused this problem — she could have been born this way, or it could have developed over time as the result of her tendency to hold her bowels, a habit that seems related to her diagnosis of Asperger’s syndrome.

After a lengthy surgery to remove the excess intestine — about 18 inches of it — Sophie’s system slowly came back to normal. She was discharged two days before Thanksgiving.

Today, she has no dietary restrictions and the only medication she is taking is an over-the-counter laxative to stay regular. A talented singer and musician who taught herself to play piano by watching YouTube videos, Sophie is looking forward to the future — one that’s considerably brighter thanks to the care she received.

Learn more about the Colorectal and Pelvic Malformation Center and the Motility and Functional Gastrointestinal Disorders Center.