Denial, anger, depression — all are steps that eventually lead to acceptance.
And they can affect kids and teenagers recently diagnosed with Crohn’s and ulcerative colitis.
An estimated 50,000 patients under 20 have inflammatory bowel disease nationwide, according to the Crohn’s & Colitis Foundation of America.
Crohn’s disease and ulcerative colitis are two types of IBD. Ulcerative colitis is a chronic disease of the large intestine, also known as the colon, in which the lining of the colon becomes inflamed and develops ulcers. Crohn’s disease can affect any part of the gastrointestinal tract, while ulcerative colitis affects only the colon.
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Dr. Robert Gomara, a pediatric gastroenterologist at Nicklaus Children’s Hospital, said both Crohn’s and colitis are chronic, debilitating diseases that affect the gastrointestinal tract. And they’re prevalent in teenagers and young adults, he said.
“Less than 20 percent are under 5 years old,” Gomara said.
The causes are unknown, but theories suggest that a genetic predisposition exists, as well as environmental triggers, he said. Studies have shown that anywhere from 5 percent to 20 percent of affected individuals have a first-degree relative with IBD.
Symptoms include diarrhea, multiple bowel movements a day, weight loss, nausea, vomiting, anemia, bloody stool and fevers. In mild Crohn’s and colitis, the appearance of the G.I. tract or colon will show subtle changes. Moderate to severe involves lacerations, erosions and inflammation, he said.
Raymond Sosa, 19, was diagnosed with Crohn’s disease in March of last year.
Sosa, who just completed his freshman year at the Honors College at Miami Dade College, said his diagnosis was especially unexpected given his only symptom was constipation.
“I didn’t have the normal symptoms,” he said.
Earlier this year, he was experiencing severe pain due to a perforation in his intestine. After doctors removed a portion of his small intestine in February and he had a second surgery to reconnect his intestines in June, Gomara said he’s still in some pain but feeling much better.
“It was really challenging because while I was hospitalized, I was also [enrolled] in school,” he said. “But the only pain I ever felt was the perforation.”
He takes Remicade, a medication prescribed to children, teens and adults with Crohn’s and ulcerative colitis. Remicade reduces symptoms, and can induce and maintain remission for those with moderate to severe Crohn’s and colitis.
Crohn’s and colitis can hinder growth, said Dr. Raghad Koutouby, a pediatric gastroenterologist at Baptist Children’s Hospital and GastroHealth. They can also affect a child’s social life, school included.
Koutouby treats Connor Bass, a 14-year-old with Crohn’s disease and irritable bowel syndrome, which is not to be confused with IBD.
“At first, we didn’t know what was going on. I couldn’t go to school because of the vomiting,” Connor said. “You can’t really do a lot when you’re in horrible pain.”
He missed anywhere from 65 to 100 days of school a year since his diagnosis in 2009. He’s changed his diet, taken steroids, not taken steroids, and is now on Remicade.
“Connor is not your typical Crohn’s and colitis patient,” she said.
At first, Connor was diagnosed only with Crohn’s. Once it was in remission, Koutouby looked elsewhere.
His pain was “impeding school, sleep — everything.
“You really have to look at [a patient’s] symptoms, follow them, and if they go on, say, am I really dealing with Crohn’s disease?” Koutouby said. “It does not stop at managing a medicine. It’s about not being trapped in the box of thinking that is Crohn’s.”
Treatment also involves learning and implementing breathing and relaxation methods.
“With every child, when I make the diagnosis, I think of it as a different level of care — medication, health, diet, vitamins, exercise,” she said.
About 30 percent of patients with IBD get osteoporosis, so Koutouby combats that with vitamin D and sun exposure.
“I tell them from the beginning, we are going to cope with the disease,” she said. “And it’s scary when they hear the word ‘disease.’ But what you’re really trying to do is empower the patient.’’
Source: Dr. Raghad Koutouby, Baptist Children’s Hospital
Symptoms of Crohn’s disease
- Persistent diarrhea
- Rectal bleeding
- Urgent need to move bowels
- Abdominal cramps and pain
- Sensation of incomplete evacuation
- Constipation (can lead to bowel obstruction)
- Loss of appetite
- Weight loss
- Night sweats
- Loss of normal menstrual cycle
Symptoms of ulcerative colitis
- Bowel movements become looser and more urgent
- Persistent diarrhea accompanied by abdominal pain and blood in the stool
- Stool is generally bloody
- Cramps and abdominal pain
Source: Crohn’s & Colitis Foundation of America