Dan­ger of a gut re­ac­tion

More kids di­ag­nosed with in­flam­ma­tory bowel dis­ease



In the past, doc­tors be­lieved that in­flam­ma­tory bowel dis­ease (IBD) rarely af­fected chil­dren — but stud­ies now sug­gest that it is more com­mon than pre­vi­ously thought, and that num­bers are on the rise. “We cur­rently un­der­stand in­flam­ma­tory bowel dis­ease to be an un­con­trolled in­flam­ma­tory re­sponse within the GI tract to what we call the mi­cro­biome or flora — the bil­lions of mi­cro­bial or­gan­isms that re­side within our guts, and con­trib­ute to our gen­eral health in ways we don’t fully un­der­stand,” says Du­bin­sky. “We also know this un­con­trolled re­sponse oc­curs in ge­net­i­cally sus­cep­ti­ble in­di­vid­u­als.”

There’s prob­a­bly an un­der­ly­ing cause that re­mains to be iden­ti­fied. “We be­lieve that that un­con­trolled in­flam­ma­tory re­sponse is trig­gered by some­thing we don’t yet know,” says Du­bin­sky. “Right now, IBD has no known cause, which ren­ders a cure un­likely in the ab­sence of known causative fac­tors.”

It’s hard to pin­point ex­actly how many chil­dren are af­fected by IBD. “We think about 7 kids per 100,000 have IBD, but the in­ci­dence is hard to quan­tify be­cause it varies depend­ing on re­gion, and co­hort to co­hort,” says Du­bin­sky. “One pat­tern is that north­ern re­gions are more af­fected than south­ern re­gions, not just in this coun­try, but be­tween north­ern and south­ern France, for in­stance. This leads us to sus­pect that vi­ta­min D might be a fac­tor.”

The western diet also seems to play a role. “As so­ci­eties west­ern­ize, they change the mi­cro­bial en­vi­ron­ment and the genes per­haps no longer rec­og­nize some bac­te­ria as be­ing harm­less,” says Du­bin­sky. “Di­ets richer in amino-3 fatty acids and fiber seem pro­tec­tive, while di­ets high in an­i­mal pro­teins seem to in­crease the risk of IBD.”

More and more chil­dren are be­ing di­ag­nosed with IBD at younger and younger ages. “This makes us won­der what is go­ing on in the en­vi­ron­ment — is it an­tibi­otic use, the way food is pro­cessed, or the role of fiber?” says Du­bin­sky. “We’re be­gin­ning to un­der­stand that ge­net­ics aren’t the big­gest player in IBD — it ap­pears to be more about the in­testi­nal flora, and how this im­pacts the way your genes ex­press them­selves.”


Most cases of in­flam­ma­tory bowel dis­ease fall into one of two cat­e­gories, ul­cer­a­tive col­i­tis and Crohn’s dis­ease, which af­fect dif­fer­ent parts of the GI tract. “Ul­cer­a­tive col­i­tis is the form of IBD de­fined by colon in­volve­ment,” says Du­bin­sky. “Col­i­tis presents in the same way for adults and chil­dren: bleed­ing, fre­quency, and ur­gency of bowel move­ments, and gen­eral pain and dis­com­fort — in other words, symp­toms re­lated to the colon.”

Crohn’s dis­ease presents it­self a lit­tle dif­fer­ently. “Crohn’s can show up any­where in the GI tract, from the mouth to the anus, so the symp­toms can be less spe­cific — like bloat­ing, blood in stool, or in chil­dren, growth fail­ure,” says Du­bin­sky. “Peo­ple can go un­di­ag­nosed for a decade, be­cause of­ten they may al­ter their eat­ing habits and im­pact the tim­ing of pre­sen­ta­tion.”


The first step to­ward get­ting the right treat­ment is get­ting the right di­ag­no­sis. “Once the doc­tor has a high sus­pi­cion of Crohn’s or col­i­tis, he or she will or­der a colonoscopy with pathol­ogy, which is the gold stan­dard di­ag­nos­tic strat­egy,” says Du­bin­sky. “The di­ag­no­sis is typ­i­cally made vis­ually by the doc­tor, who is us­ing colonoscopy to look at the lin­ing of the bowel, and can see if there is in­flam­ma­tion.” To as­sess the small bowel, the doc­tor will also do an MRI or CT en­terog­ra­phy and can of­ten be help­ful in con­firm­ing the di­ag­no­sis.

Only once the doc­tor has thor­oughly con­firmed the di­ag­no­sis can you agree on a course of treat­ment. “Treat­ment al­go­rithms have changed dra­mat­i­cally since the in­tro­duc­tion of biologic-based strate­gies in 1998,” says Du­bin­sky. “These drugs are called heal­ers, be­cause they ac­tu­ally take an ul­cer­ated in­tes­tine and re­store it to nor­mal. Be­fore that, we used steroids and im­muno-mod­u­la­tors that only pro­vided symp­toms re­lief with min­i­mal ef­fect on the in­testi­nal lin­ing.”

Who is a can­di­date for tak­ing biologic ther­a­pies? “We al­ways have to bal­ance the risks of the dis­ease with the risk and ben­e­fits of the ther­a­pies — and what we are very clear on is that the risk of un­der­treated or un­treated IBD far ex­ceeds any risk as­so­ci­ated with anti-TNF ther­apy,” says Du­bin­sky. “If we don’t use these ther­a­pies, pa­tients end up with com­pli­ca­tions that can be much more se­vere.”

While there isn’t yet a cure to IBD, there’s a lot doc­tors can do to re­turn pa­tients to a nor­mal qual­ity of life and to pre­vent dis­ease pro­gres­sion. “There’s ac­tu­ally a huge dis­con­nect be­tween how pa­tients feel and what the in­tes­tine looks like — and it’s what the in­tes­tine looks like that drives fu­ture out­comes such as surgery,” says Du­bin­sky. “You want to avoid surgery and com­pli­ca­tions, which means that feel­ing bet­ter by it­self isn’t enough. You want to feel bet­ter and pri­or­i­tize heal­ing.”


Just a year ago, doc­tors de­vel­oped a new ther­a­peu­tic tar­get. “This new drug, En­tyvio, is unique be­cause it tar­gets the GI tract se­lec­tively — and we know this kind of tar­get­ing is the next big thing,” says Du­bin­sky. “We ex­pect three or four new tar­gets to come out in less than a decade. Which means this is a time for IBD pa­tients to be hope­ful about new treat­ment op­tions.”


One of the most im­por­tant ques­tions that a fam­ily or pa­tient can ask is, “What is the goal of treat­ing IBD?” Fol­low up with, “How will this im­pact my long term prog­no­sis?” Another key ques­tion is, “Will this ther­apy heal the in­flam­ma­tion?” And never hold back on ask­ing, “What are the real risks of this ther­apy?”

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