Inflammatory bowel disease cases surging in children and adults; experts studying environmental triggers
This World IBD Day, cases of incurable diseases have surged across the US, and doctors in Colorado say they are also rapidly increasing among young children.
IBD, or inflammatory bowel diseases, including Crohn's Disease and Ulcerative Colitis, are autoimmune diseases that wreak havoc on the digestive system. When in the throes of a flare, patients experience symptoms similar to extreme food poisoning for days, weeks or even years. If left untreated, experts say these diseases can sometimes lead to life-altering surgeries, including intestine removal.
In 2023, 2.6 million people in the US had an IBD, that's nearly one out of every 100 Americans, according to the Crohn's Colitis Foundation. That's a number that has surged since 2019, when the foundation reported only 1.4 million cases nationwide.
Your Investigator Kati Weis is part of that statistic – diagnosed with Crohn's Disease in 2022. In honor of World IBD Day, she's opening the dialogue about these diseases to help others know they're not alone, and there is hope on the horizon.
She sat down with Pauline Clayman, a 15-year-old high school sophomore in Denver, who was diagnosed with Crohn's at only 9 years old.
Clayman says it all began when she was on a vacation to Asia with her family. She had already started showing signs of weight loss prior to the trip, but once overseas, her symptoms got out of control.
"In my worst, I was going to the bathroom all the time, throwing up constantly... just constantly having stomach issues," Clayman said. "It was really scary because we were traveling, and when we got back, we just had a bunch of doctors telling us it was something else and poking me with needles, and trying to figure out what was wrong with me, when we really couldn't figure it out."
She tried a number of different treatments before finding one that worked right for her body.
"The first one I was on gave me really bad psoriasis, so we had to find a different one to go on," she said.
Now, she gets IV infusions once every six to eight weeks. She has to go to a clinic for the infusions, and they can last up to three hours.
Clayman's doctor, Dr. Edward Hoffenberg, co-director of the IBD Center at of Children's Hospital Colorado in Aurora, helped her with her remission journey, and now they're good friends.
Hoffenberg says IBD cases like Clayman's are higher In young children than ever before, something that he says is concerning.
"We're seeing more kids, and they're presenting younger, and they can be quite ill. So, part of the advances in the field has been identifying these very young kids who might present in the first months or years of life who can be very, very ill... diarrhea, bleeding, not growing, vomiting, and then others can show up a little later with more of the nontraditional stuff... skin things, and joint things, and looks like food allergies," Hoffenberg said.
He says genetics are one cause of IBD in children, but researchers at his hospital are finding environmental factors are becoming increasingly more common.
"There's still a group where it's not so easy, we can't identify a single gene," Hoffenberg said."So, a lot of interest in whether it's things in the diet, in processed foods or use of antibiotics and so on that might be triggering, but it's still unclear what the fundamental issues are that are driving this increase."
Another obstacle is the high costs of current treatments on the market.
"So, for commercial insurance, the charges can be very high, it's tens of thousands of dollars a year, especially if they're infusions if they're injectables, it's a little bit less, and then the orals are often $10,000, $20,000 or $30,000 a year," Hoffenberg said. "Insurance covers a lot of it, but there's an increasing portion that's borne by families."
Without insurance, the medications can be practically inaccessible.
"We've had some families that really can't afford their drugs, and that's very difficult," Hoffenberg said.
Asked what improvements he believes are needed to better help patients, Hoffenberg said, "funding for research in kids in these rare genetic disorders is important, and funding for the programs to provide the care that's not supported by insurance, I think is really important, as well."
He also says more research is needed to help find easier ways for patients to take the medication.
"If there were easier ways to provide medications, it's gone from IVs to, to the injectables, and yes, kids can learn to do them, but if they're very young kids or kids with other issues, it may not be appropriate for them," he said. "To have the pharmaceutical industry really focus on kids, which is not a big market in providing better therapeutic approaches, would be a big win."
Until then, Hoffenberg says it's critical to detect these problems early, so treatment can be more effective. He says to look out for the signs, including rapid weight loss, persistent diarrhea and blood in the stool.
Those are symptoms Clayman proudly says she hasn't dealt with in a long time, and thanks to her treatments, she can enjoy any food she likes.
"I really hope that maybe one day they find a cure," Clayman said. "But if not, I really get excited about the pills options that are coming out recently, because it's just much easier than having to inject yourself with a needle or go to the hospital ."
Now, she's planning a new vacation of her own; 26 days backpacking in southwestern Colorado's backcountry this summer, and this time Crohn's won't get in her way.
"Keep your head up," Clayman said. "There's always the light at the end of the tunnel."
For resources about IBDs, and how to participate in critical research, click here.
For local Colorado Crohn's and Colitis support services and resources, click here.
