Nicholas Sylvis - Chronic Idiopathic Constipation

A Puzzle No One Could Solve

Watching your child struggle isn’t easy for any parent. So when Dana Sylvis saw her son Nicholas suffering from large bowel movements and constipation that caused accidents at 6 years of age, she took him to doctor after doctor to find a solution. They were told a liquid laxative was the answer, but the medicine did nothing but give Nicholas diarrhea for days. Doctors didn’t fully understand the situation when Dana told them the issues. “We were told my son was lazy and wouldn’t go to the bathroom. We’ve been told everything,” Dana said. Once he stopped taking the laxative, the constipation would return.

The constipation mixed with side effects from ineffective medicine would leave Nicholas out of school for days at a time. “He’s missed so much school it’s been ridiculous. His grades suffered because of it.”  When he was in school, accidents would happen uncontrollably, multiple times a day, causing embarrassment and discomfort for Nicholas. While he kept changes of clothes in the nurse’s office, Dana and her husband would sometimes leave work to bring him more clean clothes.

The Sylvis family spent thousands of dollars on new clothing and underwear for Nicholas. “I’ve gone through every remedy that any old lady would give me to clean his clothes,” Dana laughed. Unfortunately, nothing could get them clean. 

Even a simple trip to the store or park needed extra preparation. “We’d usually have to pack wipes and extra clothes. It’s been very hard.” The Sylvis family didn’t have the luxury to just go as they pleased.

Now 14 years old and finishing ninth grade, Nicholas was giving up hope. At school, he would often be teased by other children for the accidents he had no control over. “He had no friends for the longest time,” Dana said. “He was bullied horribly to the point where he said he would commit suicide.”
Dana couldn’t stand to see her son so unhappy. “I felt that the doctor was not being aggressive enough,’” Dana said. In 2015, they were advised to visit the Colorectal Center for Children at UPMC Children’s Hospital of Pittsburgh where they met Founding Director Luis De la Torre, MD.

Pieces Fall in to Place

A few minutes in to their appointment with Dr. De la Torre, their lives changed. X-rays revealed something no other provider had realized before. “Dr. De la Torre compared the x-rays and saw it was the same stool in every x-ray. He diagnosed it within minutes. Literally minutes,” Dana said. 

The condition is called Chronic Idiopathic Constipation. “How it happened, nobody knows,” Dr. De la Torre said. “That’s why the name is idiopathic. Idiopathic means there is not a recognizable cause for this problem.”

Nicholas was treated with three enemas. An enema introduces a concoction of fluids into the rectum to break up the stool. He would then have x-rays taken to ensure everything was cleared each time. “The only way to be sure that the patient is responding well to any treatment for constipation is based on radiology,” Dr. De la Torre said. Dr. De la Torre then prescribed Senna, a laxative used to treat constipation. A multitude of additional x-rays verified that the blockage had been cleared. This was the treatment they had hoped for. “After years of torture, bullying, and sadness, he was turned around after three days of enema,” said Dana.
“The technique we use here is different from other hospitals and services,” Dr. De la Torre said. “We start with three enemas, try to do a very good cleanout, then try a laxative specific for Nicholas.”

While Nicholas still takes medication daily, it’s a small price to pay for the freedom that he and his family now have. The medication helps ensure that he doesn’t incur another obstruction. So far it seems to be working. Since the treatment, Nicholas hasn’t had a single accident.

No More Missing Out

After suffering for almost 8 years, the entire Sylvis family is now able to lead a better life. “These problems affect not just the patient, but the whole family,” Dr. De la Torre said. The Sylvis family took a trip to the zoo soon after Nicholas’ procedure, something that would’ve ended in an accident before the treatment. “This is the first time we went anywhere where we’ve had no issues. It’s so nice to just go.” No more stopping to change clothes or leaving an event early so Nicholas could clean himself up. “We can go places at the drop of a hat and not worry,” Dana said.

Dana says that while Nicholas missed out on a lot before, he’s beginning to make up for it. He used to stand feet away from his teammates during their huddle at his football or lacrosse games so they wouldn’t notice he’d had an accident. Now, he’s shoulder to shoulder with his coaches and teammates.  He can go over to friends’ houses and sleep over, something he hasn’t been able to do for years.  He’s swimming now. Before, he couldn’t even go in a pool. Dr. De la Torre saw a change in Nicholas days after the treatment. “Nicholas was different when he left. He was very happy.” Dana agrees. “He’s happy now. He’s got friends. He’s a totally different kid.”

Dana doesn’t know what life would be like, or if she would even still have her son, if the Colorectal Center hadn’t found a treatment. “Dr. De la Torre fixed my son in days,” Dana said. “It was absolutely life changing. I can’t even thank him enough. I tell everyone I know about Dr. De la Torre. We can’t explain how grateful we are for having him.”

Years of improper and unhelpful treatments, however, have caused mega rectum.” While most people’s rectums are a couple of inches long, Nicholas’ stretches all the way up to his ribcage. While it is likely he will have to have a rectum reduction surgery in the future, Dana is confident that the Colorectal Center at UPMC Children’s Hospital and Dr. De la Torre will take good care of her son.

The Colorectal Center Difference

The Colorectal Center for Children has expertise in idiopathic constipation, Hirschsrung’s disease, anorectal malformation (like imperforated anus), and fecal incontinence, among others.  According to Dr. De la Torre, what makes the Colorectal Center unique is the “interest, expertise, and dedication to these patients” by the physicians and staff. Dr. De la Torre explains that these issues require specialized care.

When treated improperly, Dr. De la Torre says that more than 50 percent of patients have complications.
 “Every patient needs a bowel management program, but every bowel management program is different. Every patient is different.” Dr. De la Torre sees almost 70 patients a year with this problem and says, for most, treatment can greatly improve their quality of life.

Dana and Nicholas both hope that he will one day be able to live without taking daily medication. But they know how far they’ve come. Dr. De la Torre’s help “changed everything. Nicholas can walk with his head held high and do tenth grade like everyone else,” says Dana.

Nicholas has the chance to lead a better life, and the Sylvis family is free to do things that they only dreamed of before. For Nicholas and his family, they just hope for a better quality of life, “and that’s where we’re heading.” 

Contact Us

For more information, contact the Colorectal Center for Children at UPMC Children’s Hospital of Pittsburgh..

Keniel suffered from Chronic Idiopathic Constipation. Read more about his experience and procedure at UPMC.
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Juan Emilio suffered from Hirschsprung’s disease. Read more about his experience and procedure at UPMC.
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