Forget what you think you know about Crohn’s disease. Forget about age. Forget about the bathroom-related symptoms that can often be minimized by those not affected by this chronic, life-interrupting, painful, gastrointestinal disease that inflames the lining of the digestive tract.

Instead, consider 8-year-old Caleb of Northbridge. Last year at this time, he broke his leg, which his mom says triggered troubling symptoms. Multiple tests concluded her vivacious, technology-loving, active son had Crohn’s disease.

“Honestly, I thought it was a ‘pooping disease.’ Something you can’t control,” admits mom Carla Smith. “I didn’t know anything about it, and I don’t think a lot of people get it.”

But now she does. Her son gets fatigued easily. His bones are weaker. Doctors recommend that he stays clear of high-impact sports. (He used to love ice hockey). She constantly must worry about what he eats, if his body is able to absorb nutrients, where the closest bathroom is. She knows his condition will never be cured. It can only be managed. And, mostly, she worries about the long-term effects of the medication he must take to keep symptoms at bay.

“I want others to know the bottom line: [This disease] affects kids 24 hours a day,” she says. “It affects him in school, his social life, his free time. I didn’t realize children could have or be recommended to be on scary medications with long-term effects. The number of kids being diagnosed with this seems to be increasing and we don’t know why. We don’t know if it’s genetic, but there is no history on either side of our family.”

According to the Crohn’s & Colitis Foundation of America (CCFA), there may be as many as 80,000 children in the United States with Inflammatory Bowel Disease. Most get diagnosed before the age of 35; it’s very rare for a child under 8 to be diagnosed.

“My daughter was 4 years old when she was diagnosed,” says Lisa Fournier of Uxbridge (at left with daughter Randi). “She is 17 now. She’s had this disease her whole life, and 13 years ago there was such a lack of support and information. I struggled through everything and made it a mission to never let anyone feel as alone and lost as I was.”

So she did something about it. Two years ago, Fournier launched a family-style Inflammatory Bowel Disease Support Group backed by CCFA (ccfa.org) and the Division of Pediatric Gastroenterology at UMass Memorial Medical Center in Worcester.

“It was created for families because it is a family disease. Everyone is impacted,” she explains. “For the younger kids, I think the support group gives them a vision of what it’s like to grow up with it and they can look up to older kids and see how they manage to live with it. And it gives the older kids a purpose.”

One person showed up at the first meeting. Now Fournier’s contact list exceeds 50 families. The youngest member is 4 and the oldest is 19. The group meets the third Thursday of every month from 6:30 p.m. to 7:30 p.m. at UMass Memorial Medical Center. A second group — directed toward younger kids — will soon be underway and will be held the first Thursday of each month at Tri-River Family Health Center in Uxbridge from 5 p.m. to 6 p.m.

“We support each other, and if we need additional information, the pediatric gastric physicians are available to me if we need anything,” Fournier says.

Life with Crohn’s

“Things others take for granted that are simple are so complicated when someone in the family has this disease,” Fournier notes. “The behind-the-scenes prep for her to have normalcy takes tremendous effort. Take going to the mall when she was 13. She’s a teenager and wants to go to the mall. You wonder if she eats there how will it affect her later or next week? One wrong thing and a flare could last months. Everything has to be planned out.”

Inflammatory bowel diseases (IBD), which include Crohn’s and ulcerative colitis, affect as many as 1.6 million Americans. While the exact cause of IBD is not entirely understood, it is known to involve an interaction between genes, the immune system, and environmental factors.

“I want these kids to know that they don’t have to be limited in their life because of this disease. They can do anything with careful planning,” Fournier says. “Otherwise, a child will learn to hate the disease, and the last thing you want is to teach them to cower instead of having courage to advocate.”
According to CCFA, when IBD is diagnosed in childhood, it may be more extensive and follow a more severe course than when it is diagnosed in adults. Some children with IBD experience delayed puberty and some fail to grow at a normal rate. Symptoms can flare up unexpectedly and can be painful, uncomfortable, inconvenient, and embarrassing.

“None of us signed up for this,” Fournier notes. “No one does, but it’s what you do with it. I have seen some parents choose to ignore the symptoms, but there can be some serious side effects. These kids have an increased risk for things like colon cancer. You have to be proactive.”

Crohn’s disease is not the same as ulcerative colitis, another type of IBD. Ulcerative colitis is limited to the colon. Crohn’s affects the end of the small bowel and the beginning of the colon, but it could affect any part of the gastrointestinal tract from the mouth to the anus.

According to the CCFA, about 70% of people with Crohn’s eventually require surgery. Approximately 30% of patients who have surgery experience a recurrence of their symptoms within three years, and up to 60% will have a recurrence within 10 years.

“I spend so much time on meal prep. There are a lot of things Caleb can’t eat. It’s a different lifestyle,” Smith explains. “And what works now for his diet may change as he grows up. It’s not cut and dry. I worry constantly if he is absorbing the nutrients he needs. If he’s invited to a party, can he eat what they are having? What he eats could have him in a lot of pain.”

A lack of definitive answers is hardest, she adds: “These diseases are so unpredictable, as they have flares that can last a day, a month, a year. I talk to my son about it a lot and want him to not be embarrassed, but use it as a way to educate others and stand up for himself.”

Smith says she even had a 504 plan instituted for him at school, which ensures specific accommodations around his diagnosis: “The school knows that he can go to the restroom whenever he wants, have a drink or snack when he wants, and be excused from school for appointments or sick days.”

Despite the daily demands, she remembers when this lifestyle and disease was all new: “I would spend countless times in the bathroom with him where he would ask me, ‘Why do I have this disease? Why can’t I just eat what I want and not feel this pain?’ It was very tough and it was so hard to be strong, and still is. I like to learn from what others have gone through.”

Caleb’s symptoms are currently being managed through medication. He has to take a number of pills every day but, his mom says, he’s good about it.

“My biggest hope for my son is that it [the disease] doesn’t become an excuse,” she says. “I don’t want him to use it for a reason he can’t do something. I want him to excel in whatever he does.”

Advocating and educating others about Crohn’s is something Fournier hopes to accomplish with the support group. She said some teens who joined admitted to never speaking about their disease to friends, “but slowly they grew to understand their role in advocating.”

In fact, the Inflammatory Bowel Disease Support Group’s teen members collectively raised $12,500 for last fall’s annual “A Touch of Football” event at Gillette Stadium to support finding cures for Crohn’s disease and ulcerative colitis. The day-long CCFA fundraising event includes a flag football tournament, and the top fundraising team gets to have dinner with a Patriots player. The teens were the first-ever team of all-IBD patients, rounded out with some of their doctors from UMass Memorial Medical Center. The aptly-named Colon Crusaders are awaiting their dinner with Patriots Right Tackle Sebastian Vollmer.

“They begin to learn if it’s not going away, you have to make it a part of you,” says a proud Fournier. “These teens went from silence to a field at a stadium.”

Recognizing the Signs and Symptoms
Crohn’s disease can affect any part of the gastrointestinal tract. While symptoms vary from patient to patient and some may be more common than others, the telltale symptoms of Crohn’s disease include:
Symptoms related to inflammation of the GI tract:
• Persistent diarrhea
• Rectal bleeding
• Urgent need to move bowels
• Abdominal cramps and pain
• Sensation of incomplete
evacuation
• Constipation (can lead to bowel obstruction)

General symptoms that may also be associated with IBD:
• Fever
• Loss of appetite
• Weight loss
• Fatigue
• Night sweats
• Loss of normal menstrual cycle

If you think you or your child are showing signs of Crohn’s symptoms, only proper testing performed by a physician can render a diagnosis.
Boston Take Steps for Crohn’s & Colitis

A community fundraising event
June 4, 9 a.m.
Parkman Bandstand — Boston Common

To date, the Take Steps fundraising walks have has raised more than $60 million to fund mission-critical research and patient support program. The next “A Touch of Football” event will be held in the fall of 2016. To find more information about IBD and CCFA’s research efforts, or to get involved, visit ccfa.org