Stories about: Crohn’s disease

Carson Domey for president!

Carson Domey OFG Crohns

Most 11-year-old boys don’t own multiple dress suits, nor have they testified at a State Capitol. But Carson Domey is far from typical. As his Twitter handle suggests (@POTUSIT), he’s in training to be President.

This year has been a particularly productive one for Carson, as he takes cues for his 2044 presidential campaign. Five years ago, though, Carson was thinking more about getting a diagnosis than practicing politics.

Starting around age 6, Carson’s cheeks and gums would mysteriously become puffy and red. “It would come and go, and was something that only a mom would pick up on,” remembers Carson’s mother, Michelle. She took him to a dentist and an otolaryngologist, but the symptoms were always gone by appointment time, so neither doctor was concerned.

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Faces of IBD: Every journey is unique

Hover over the photos to read about Boston Children’s IBD patients and the care they receive.

Boston Children’s Inflammatory Bowel Disease Center treats over 1,500 children, adolescents and young adults managing IBD each year. Whether patients are traveling across the globe for very early onset IBD care, balancing diet and medication at home, school or abroad or living a life free of Crohn’s or colitis after surgery, the caregivers at the Boston Children’s Inflammatory Bowel Disease Center understand the challenges patients and families face and support them every step of the way. In honor of National Crohn’s & Colitis Awareness Week (Dec. 1-7), we are celebrating our IBD patients and the team of physicians, nurses, dietitians and social workers who supported them through their journey.

Learn more about the Boston Children’s Inflammatory Bowel Disease Center.

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Back to school: 6 tips to manage IBD at college

Danielle LeavittI’m a 20-year-old rising junior at Harvard University and I have inflammatory bowel disease (IBD).

Growing up in Orlando, Florida, I participated in typical childhood activities and was what you would consider to be a “normal” kid.

But I was dealing with chronic, excruciating abdominal pain, diarrhea and bloody stools. At age 10, doctors diagnosed me with Crohn’s disease.

I went from one hospital visit to another and was prescribed various pills, injections and infusions, all of which failed at some point.

During high school, I was embarrassed to discuss my disease. Very few of my teachers and friends knew I had Crohn’s. I was afraid I wouldn’t be able to manage school assignments, participate in athletics and still have a social life.

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Caring for Christopher’s Crohn’s disease close to home

Screen Shot 2016-01-14 at 2.47.34 PMGrowing up, Christopher Padilha was a perfectly healthy child. He ate regularly, and even though he was a bit on the smaller side, his health and growth were typical.

But one Friday night, at the age of 5, that changed.

“Friday is pizza day at Christopher’s school and that’s what he had for lunch that afternoon,” remembers his mother, Palmira. “But that night he got violently sick, woke up in pain and had terrible diarrhea. It was frightening.”

The next day Palmira took Christopher to see his pediatrician. The doctor suspected Christopher might have been suffering from an acute reaction to gluten, so Palmira removed all gluten from her son’s diet. However, Christopher was still experiencing serious gastrointestinal distress.

The pediatrician then suspected that Christopher may have developed a sudden intolerance to lactose and suggested removing dairy from his diet. Unfortunately, Christopher remained in great pain and continued going to the bathroom almost hourly.

“Once food allergies were ruled out, the doctor was stumped,” Palmira says. “The pediatrician suggested Christopher see a specialist for some more in-depth diagnostic testing.”

After researching their options, the Padilhas decided to see Dr. Alejandro Flores at Boston Children’s Hospital in Boston.

Flores is highly regarded among pediatric gastroenterologists, but for the Padilhas, the 45 miles that separated their Worcester home from Flores’s Boston office made the trip a daunting one.

“At that point, Christopher was very sick and had to go to the bathroom almost constantly,” Palmira says.

Based on the results of a colonoscopy, Flores was finally able to give the Padilhas a name for the mystery illness that had been plaguing their son: Crohn’s disease. Flores explained that Crohn’s is caused by an inflammation of the digestive tract and is typically treated with medication.

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