IDEAS Kids

Disease attacks boy’s digestive system

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.”

Discussion Groups for IDEAS Teenagers

Ever feel like no one else understands what it’s like to have intestinal disease? To help you get connected, iDEAS KiDS offers an online discussion group through Google Groups – a place to talk about the unique challenges of being a teenager, and find support from other teens with intestinal disease.

To protect your privacy and safety, the Teen iDEAS group is not public. Please talk to your parents about joining the group, and be sure to let them know there is a group for them too!

If you’d like to join, click here.

High School or College can be stressful with IBD learn simple stress management techniques that will help improve how you feel by changing your actions and thoughts.

Parents of Children with Inflammatory Bowel Disease (IBD)

The following sites may help you better understand what your child is experiencing, how to seek support for them (and yourself!), and their healthcare needs.
A Guide for Parents (CCFA)
You have just learned that your child has a chronic form of inflammatory bowel disease (either ulcerative colitis or Crohn’s disease); here’s some helpful information!

Starlight Stories

My Crohn’s and Colitis Care My Crohn’s and Colitis Care is a new guide for people with Inflammatory Bowel Disease which identifies the top 10 essentials of a good IBD service, outlining how you can work in partnership with the health professionals supporting you to manage your condition and care.

Inflammatory Bowel Disease (Kids Health)
It’s estimated that up to 1 million Americans have inflammatory bowel disease. IBD occurs most frequently in people ages 15 to 30, but it can also affect younger children and older people.

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Medical Issues Video (CCFA)
This program discusses medical issues affecting families and children living with Crohn’s and ulcerative colitis, types of inflammatory bowel disease.

 

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Treating Children and Adolescents (CCFA)
Children require individualized treatment that takes into account the specific disease manifestations (location of inflammation in the intestines, duration, prior response to therapy), the psychosocial adaptation of the child and family, and the child’s age and size.