Encopresis — a secret struggle

THE SECRET STRUGGLE OF ENCOPRESIS AND STOOL WITHHOLDING

Behind closed doors all over the world, many par­ents and chil­dren deal with a secret strug­gle that may linger for years. The ten­sion brings par­ents to their wits end, and the chil­dren expe­ri­enc­ing the issue are often left feel­ing mis­un­der­stood and alone, or worse, fac­ing the ridicule of their peers.

The root of these prob­lems: chil­dren not using the toi­let. These issues, for some, stretch well beyond nor­mal pot­ty-train­ing age. Some may just not be able to pot­ty train suc­cess­ful­ly. Oth­ers, how­ev­er, may refuse to sit on the toi­let after appar­ent­ly being toi­let trained. These chil­dren with­hold stool due to fear of pain or the desire to main­tain con­trol. This behav­ior fre­quent­ly results in stool acci­dents, called encopresis.

These issues are large­ly com­pound­ed when fam­i­lies are unable to enroll their chil­dren in school, sum­mer camp, swim­ming or oth­er activities.

As a pedi­atric gas­troen­terol­o­gist who has focused my career on toi­let train­ing chal­lenges in chil­dren with or with­out spe­cial needs, I have come into con­tact with par­ents at their most des­per­ate moments.

I’ve had a par­ent come to me when her 6‑year-old child was hos­pi­tal­ized due to severe con­sti­pa­tion. Writ­ing to me after being up all night, in need of help, she was com­ing to the real­iza­tion that her daugh­ter was with­hold­ing stool.

“I feel very dis­cour­aged,” she wrote, “as I under­stand it could take months to years to over­come our prob­lem. I’m also real­iz­ing what an impact this is hav­ing on our entire fam­i­ly, includ­ing sib­lings and espe­cial­ly on my daughter’s self-esteem.”

Anoth­er par­ent approached me when her son, after being suc­cess­ful­ly pot­ty trained for more than a year, had begun to have soil­ing acci­dents in preschool. The acci­dents lin­gered for more than a year. Not only had the teacher and stu­dents noticed, but the teacher had request­ed the par­ent to come to school for dai­ly “clean-ups.” The boy was not allowed to par­tic­i­pate in an enrich­ment pro­gram because it includ­ed fre­quent field trips, not allowed because he was unable to stay “clean.”

“He is very embar­rassed, and says he can­not help it,” the par­ent wrote. “We have spent much time with stick­ers, tokens, can­dy – noth­ing works. At this point, I am desperate”.

One par­ent came to me after hav­ing to hold her son back from kinder­garten, afraid he would be “made fun of by anoth­er child for wear­ing pull ups or hav­ing an accident.”

“The school has sent some­one over to try and help, and we’ve tried every­thing and noth­ing has worked, so you are my only hope,” she wrote.

Par­ents come to me for help, sup­port and answers, and what some don’t real­ize is they aren’t alone. In the midst of deal­ing with pot­ty issues day-to-day, they feel like they have no place left to turn, and the light at the end of the tun­nel has long been extinguished.

But these par­ents are far from alone and with­out hope. Thir­ty to forty per­cent of patients referred to a pedi­atric gas­troen­terol­o­gist have abdom­i­nal pain, abdom­i­nal dis­ten­tion, increased gas, and symp­toms relat­ed to stool with­hold­ing, with or with­out enco­pre­sis. And enco­pre­sis is a com­mon prob­lem, one that occurs in 1 to 3 per­cent of chil­dren at one time or anoth­er in childhood.

The preva­lence of enco­pre­sis is also like­ly under­es­ti­mat­ed, as many health-care providers fre­quent­ly are not aware that their patients have stool with­hold­ing and enco­pre­sis. Under­re­port­ing is also due to the stig­ma attached to this con­di­tion, pre­vent­ing par­ents from talk­ing with friends, fam­i­ly and health-care pro­fes­sion­als about the problem.

There is a solu­tion to this prob­lem. By pro­vid­ing per­son­al­ized coach­ing by tele­phone, we work through all kinds of lin­ger­ing pot­ty issues. I speak with my clients dai­ly to make adjust­ments in their children’s treat­ment based on the feed­back I receive, and move for­ward until suc­cess is achieved.

Toi­let train­ing is the great­est achieve­ment of ear­ly child­hood. With suc­cess­ful toi­let train­ing, chil­dren gain a sense of inde­pen­dence and self-esteem, and the dai­ly abil­i­ty to con­cen­trate in school and par­tic­i­pate in var­i­ous activ­i­ties. It is my belief that every child with rea­son­able cog­ni­tive and recep­tive abil­i­ties (abil­i­ty to respond to one-step com­mands) can be toi­let trained.

“It takes work and ded­i­ca­tion, but it’s so worth it in the end,” said a par­ent of one of my clients. “My daugh­ter feels so much hap­pi­er, and she has expressed this to me many times. There is no more ten­sion in the household.”