Six-year-old Sean Scott adores frogs, mother nature and scientific research.
Getting what he is calling a special tummy is not going to stop him from being outside whenever possible.
Exactly what it entails, nevertheless, is the fact that just about every eight weeks, Sean, accompanied by his dad, Matt, or his mom, Jessie, will have to spend five hours going through an infusion to help remedy the intestinal tract illness that triggers his “special tummy.”
Three year ago, Sean, who lives in Yankton, was clinically determined to have Crohn’s disease, an agonizing, scientifically not curable disease that strikes the digestive tract.
Crohn’s and ulcerative colitis are regarded with each other as inflamation related digestive tract diseases. Crohn’s disease can strike just about anywhere across the digestive system, although ulcerative colitis inflames only the large intestine.
One in 200 individuals in the United States are already clinically determined to have Crohn’s or Ulcerative Colitis, with as much as 150,000 of them younger than 16. The majority of people get the illnesses in between age range of 15 and 35.
Symptoms consist of tummy pain, prolonged looseness of the bowels, rectal bleeding, high temperature, weight-loss and exhaustion.
The Scotts suspected for 6 months previous to Sean’s medical diagnosis that something was drastically wrong.
“He would say ‘My belly hurts,’ but he was really little, he could not say a lot more,” Jessie Scott said. “He had a lot of diarrhea, and it got progressively worse. We went in several times before he was eventually diagnosed. Just to watch him in pain is really hard as a parent.”
The Scotts were familiar with Crohn’s disease because Matt Scott’s father, Bill, also has been diagnosed with it. Researchers have not determined a definite familial connection.
However, although if one family member has it, it probably will develop in someone else.
Sean’s Crohn’s disease was diagnosed through a colonoscopy/endoscopy. Because his descending colon was so inflamed, it was perforated during the procedure, leading to a two-week hospitalization.
After several unsuccessful drugs, Sean found relief with infusions of Remicade. That drug has allowed him to expand the foods he can eat without incurring a flare-up.
“Not too long ago, where he made the connection between food and pain, he realized, ‘My tummy hurts when I eat; maybe I just won’t eat,’ ” Jessie Scott said.
The foods Sean avoids are those that are greasy or difficult to digest, such as raw broccoli and beans. For a time, the Scott family avoided dairy, gluten, soy and nuts.
Sean, who will enter kindergarten this fall, has been named the Honored Hero for this year’s Crohn’s & Colitis Foundation of America’s Take Steps walk.
CCFA spokeswoman Tovah Domenick said the walk this Saturday is one of two major fundraisers for the foundation and is celebrating its fifth year.
“It’s a disease people suffer from in silence because it can be embarrassing,” Domenick said.
“When you’re having a flare-up, it is very painful. You’re in and out of the doctor’s office and hospital, there’s a lot of bathroom usage, it’s very uncomfortable and very painful.”
Advances in treatment of Crohn’s disease means a reduction in the number of surgeries and the use of steroids, Domenick said.
In as little as five years’ time, Sean’s body could adjust to the Remicade, and it no longer will be effective. Money raised in the Take Steps walk will be used to pursue new treatment options, Domenick said.
The Scotts and their extended family will take part in Take Steps. Their team is named the Great Scotts.
“To me, the walk is a social connection for other people who suffer from irritable bowel syndrome, but its goal is to fundraise for research,” Jessie Scott said.
“If there isn’t any research, there isn’t any opportunity for further medication, and at this point, we need as many as we can get. Or a cure, which would be even better.”