I am at my wits end... and I need some people to talk to that have a child with encopresis (or enuresis). I think all of my patience has left and I don't know what to do next. The ability to talk to others about their successes or otherwise would be great.
I also would like to find someone who has come out successfully on the other side of this issue. I don't feel like I will ever make it through right now. Does this ever end or go away or is this something I have to prepare myself to live with the rest of his (or my) life?
Hi, I have recently come across encorpresis in my research and it seems to fit my sister to a "T". I am sorry to tell you that she is now 20 years old and still experiencing problems.
I think the major difficulty for her has been our families inability to deal with it! As a toddler she was ridiculed, spanked, and punished for soiling herself; which has effectually taught her to hide it and not admit it to any one. She has therefore never sought any help for it and will actually deny it even when presented with her own filthy underpants.
I think that she could truly have been helped if she had a warm, compassionate and loving environment inwhich she felt she was accepted regardless of her bowel problems. Perhaps you could help him to have a vocabulary about his problem and enable and encourage him to speak about it. Like wise have him take an active role in his therapy if he is old enough or a mental state that could accept such responsibilities. If nothing else, focus on his abilites and build up his self esteem, my dear sister is incredibly shy and seems to have no self worth, which just compunds the problem.
good luck, I hope that others will be able to help you aswell and I too, would love to read a succes story about!
sammy
Encopresis is a condition that starts with constipation (usually in boys) at the age of 5. Some kids don't get out of it (unfortunately some take it in to adulthood). I don't want to have to wait that long for it to finally go away but it seems like that is the case.
20 years old? Does she have boyfriends? Does she talk about it? My son says taht he doesn't know when it happens. There are all these things that we talk about but for some reason he can't seem to make it go away. I don't know anyone that is going through or been through this.
My son is very affectionate, compassionate and manerable. He gets good grades and is even friendly. BUT this problem makes him hard to be around (for everyone).
I bought a new car (for example) and I can't let him sit on the seats because i don't know when he will have an accident. He knows he has the problem and is ashamed of having accidents and that is hard to deal with too.
The main thing I have a problem with is that he won't clean himself up immediately HE HAS TO BE TOLD. Then on top of that, he stashes his underwear after he soils them.
I was in your shoes with my 9 year old daughter until last year.She would do the SAME thing...not clean herself up,seemingly not care that she smelled,hide her undies,etc. Her Doctor put her on a mild laxative called Miralax (sp?).It worked WONDERS!!!! Miralax comes in powder form that is completely tasteless and easily dissolved into your child's favorite drink. I can't recall the amount she had to take,but the Doctor had her keep a journal and record all her clean days (positive reinforcement).The Miralax plus a high fiber diet helped clean her out and keep her stools soft enough to get rid of the constipation. After we slowly weaned her off the Miralax (so her body wouldn't become dependent),we just had her eat lots of apples,grape juice,etc. to keep her "regular" and that was pretty much the end of it.The thing that always seemed really odd to me was that she NEVER had an accident at school...she would have them at friends' houses and in public,but never at school...strange.She still has enuresis,though (bedwetting...she has to wear GoodNights),but just started taking meds for that.For years we didn't understand what was going on with our daughter (or that it even had a name),but once we learned more about it (mainly through Internet research),we were able to get a more clear understanding of what needed to be done to remedy the problem.Aside from all of that,have you had your son checked for IBS?
Regardless of where you live you might want to try looking up the Milwaukee childrens hospital website as they have a clinic specifically devoted to pediatric constipation/GI disorders. They may be able to help regardless of where you live.
Did you doctor know a lot about encopresis or did he/she just "try" miralax and a high fiber diet? In other words... how many patients had he treated with it?
You are in Ohio too... maybe I could just go to your doctor. Cincinnati doctors don't know anything (or enough) he is in counsleing now (in Beavercreek) and they want to have him evaluated psychiatrically to see if he is depressed or have an anxiety disorder because he seems to do it when he is nervous or excited.
well,I honestly don't know how many patients our Doctor has seen with this problem,but he seemed to have alot of facts and literature,and a good understanding of the problem.As far as psychiatric counseling goes,I really don't see where that will help your son.His problem may have STARTED as an emotional one (holding back his stools maybe because of anxiety,or whatever) but it has turned itself into a medical problem that needs to be dealt with first.I'm assuming you have done your fair share of research online (which was the only place I found any info...I found absolutely nothing in books),so you have a pretty good understanding of what is happening inside his body.The Miralax and high fiber diet really seemed to be a logical solution for softening the stool and allowing the colon to gain back it's strength to do its job.Are you seeing a Pediatrician or a gastroenterologist?The Gastroenterologist might have a better understanding of your son's condition.I may have just gotten lucky with my Pediatrician.Really,as if the problem itself wasn't irritating enough,it seems like none of the so-called "experts" know a thing about it! I've never seen encoprecis covered in any Parents magazine,medical book,etc. The word wasn't even in my Mecial Terminology book in college
When I was young. i would "hold it" until i was bend over in pain with constipation.
Sometimes I would sqat to keep from going because I knew that after holding it for so long, it would hurt when I went, so i would try to put it off as long as i could.
It started around the age of 5, right after my grandfather passed away.
I also began having problems with my bladder, i would hold it when i had to pee also.
My mom took me to the doctor and actualy asked her if I had been sexually molested.(i had not).
For years I would have to go in to the doctor or have a nurse come out and give me enemas or insert a finger to make me go to the bathroom.
The doctor told my mom that the reason for my holding it was most likely because I felt out of control.
My grandfather had passed away, and I could not control what was going on around me in my life because I was so young.
When i got into the 6th grade I also had the problem with peeing.
I would hold it and eventually the sphincter muscle at the top of the urethra became so weak that i would "drip" constantly.
I had numourous tests, usually consisting of inserting a catheriter(sp?) and filling my bladder with 1 or 2 bottles of liquid and then taking xrays.
it was extremely traumatic because we didnt ever really learn anything.
I had a couple surgeries to widen the urethra.
Finally the doctors tried an experimental "Biofeedback Therapy"
insurance would not cover the treatment, which was 2 times a week for 6 weeks.
a doctor at a clinic would place small sticky electrodes around the vaginal area and I was taght how to do cagle excersized.
when i held the muscle for a long time it would who up on a screen that the wires were hooked to.
it was painless, and worked wonders.
I couldnt beleive it.
Perhaps they have a biofeedback therapy for bowels also.
you should ask the doctors in your area about it.
I was also diagnosed with IBS when i was older.
IBS causes constipation, diarhea, stomach cramps,bloating.(not all at the same time, and not always alll of those symptoms)
your son could have the beginning stages of IBS since that is the way I started.
I am 20 now and the only thing that ever helped completely with the stomach problems was Paxil, an antianxiety drug.
I took it for 2 years after a death of a close cousin and a heart attack of my mother.
the paxil helped alot, combined with therapy.
I weened myself off of it finally, with 3 failed attempts because of withdrawl.
reguardless of if your son had emotional problems which caused this to happen...
you should think about counseling for him because the affects of the problem will eventually cause problems.
the embarrassment alone is enough to cause a child lifelong trauma.
i was told that IBS was stress induced,
but I often say..
that the IBS causes the stress.
if by any chance your son has IBS(irritable bowel syndrome)
normal foods that you would think would help soften his stools such as fruits and salads, may actually make it worse, because these things are hard to digest.
salad is one of the toughest foods to digest.
also, any dairy: cheese, ice cream, milk, fried foods, etc can make IBS very hard to deal with.
He is in "counseling" and we actaully have had 4 good days (you have to start somewhere). They think he has an anxiety disorder and that is why they want him to see the psychiatrist because we eat a good fiber diet (no fast food and soda at all) He likes bread and I try to get him not to eat it and no bananas at all.
But other than that I think he tries I just wish he could clean himself up and not stash stuff.
My 9 yr old daughter struggled for years with this. We never made her feel bad, we knew she couldn't help it. We talked to her pediatrition who referred us to a urologist. After an ultasound of her kidneys and bladder were normal, he prescribed a medication called ditropan to help her regain bladder control. It worked quickly and she was weaned off the medication within 2-3 months. She has only wet the be once or twice in the last year. She also had to urinate a lot during the day making it tough at school. That is also under control. Please talk to your childs doctor as soon as possible. Hope this helps!
Well everyone I haven't been here for a few days... sorry.
We have been to hell and back BUT his counselor got us into an emergency meeting with a psychiatrist they think it is anxiety related and placed him on an anti anxiety and anti depression drug. So we will see what happens.
This is rough going through this but hopefully things will look up. (how do you get the smiles in the messages )
Hi, My neice has this same thing and is now 11 years old. She has been to specialists and they can't help. She is starting to get a little better. She doesn't clean herself either and won't tell anyone when she messes herself. I pray it will get better for her and your son too and can't imagine what they go through.
11 Year Old w/Encopretic Behavior 
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