encopresis dealing for 8 years

[TMB2S]

I am new to this, just signed up today. Not sure of all the abbreviations so let me try. My child is now 14 have had encopresis for 8 years. We have been to too many Dr to count. There has been so many guesses I can’t list.

Was told he was ADHD & on concerta and helping ADHD only. We were told that he would grow out of it. He was put on stool softeners & enemas to "clean" him out.

He will deign that it is there, state that all you are doing is trying to embarrass him, or my personal favorite that I planted the BM in his pants to justify yelling. He hides the soiled pants, leaves them on the floor, piles them up, hides them in other people’s clothes, or just wears them. It is everyone else’s fault. He is innocent. We were told that when he was interested in girls it would stop. He has "girlfriends" that understand him and as one put it her mother works in a nursing home so she is use to it. He is in high school and today at Dr. appointment. told me that I only have to put up with it for 3 more years. Our house smells worse than an outhouse. I am constantly finding more. He will even hide food in his bathroom with soiled underwear in a bag next to it. He stained the toilet due to him actually going in it and not flushing. Had to scrub and soaked it with bleach while gone for a week. When the little “balls” roll out of his pants he just grinds them into the floor. He swears that no one knows but us yet his friends are asking why he smells, they are just kidding is his comment.
He also wets his bed at night. The urologist stated that due to him holding it for so long the only time that his muscles relax is when he is asleep. He will wear his underwear for them to dry. He leaves his sheets to dry and will sleep on them again unless you catch it. We got a bell and pad to alarm when he wets. He unplugs it or moves it under his pillows so it won't wake him up.

He doesn't like friends to come over because the youngest might rat on him. He says that he is embarrassed but does nothing. He claims that he doesn't know when he does it, yet can tell you when and where he did. He told the DR he couldn't feel anything. Was tested by a neurologist and all muscles are normal. Even admitted he can feel it. Every DR states that there is nothing physically wrong with him. It is either an attention or controlling issue.

We have tried to ignore it and the smell gets so bad that it can knock you out. If we are not careful and run bleach in-between his clothes in the washer others get sick.

For years the DR have told him to retrain his muscles every time he promises to he doesn't try. He will lie about pretty much everything and then get mad when he isn't believed.
He will stand there with full pants ,where there is no doubt, and tell you he is clean and even when he sees it he will dismiss it.

We have tried to reward him, he will do better to get the reward and then go back to doing it. When in depends due to goodnights don’t fit anymore he not only soils but wets on himself because as he puts it why does it matter. We buy, one time use underwear, he will not throw them away. Have even went without and it rolls on the floor.

I have realized that he will not stop unless he wants to yet have no clue as to when or what will cause that. We are at the end of our rope and have talked about school or special programs. Looked into military school but he will be expelled and forfeit tuition if he does it there. Residential programs are around $3500/mo pulse therapy, and an institution won’t help it would just hinder. Nothing is helping or working.

 

[Estherfromjerusalem]

Hello TMB2S,

I just wanted to welcome you to the site.

Your enco situation sounds so hard, and I feel for you. I know that with my son (who is now 21) it went, just like that, on its own, when he was about 13 and a half. (It had begun when he was four and a half, after he had been completely clean and dry for a couple of years.)

Your situation sounds more extreme, and I don't really know what to say to you. Just one thing I wanted to point out: when they don't feel that they are going, it isn't the muscles that are the factor there, but the nerves. With encopresis, the pressure on the bottom of the colon causes the nerves there to be damaged, and then they don't feel it. The damage seems to be reversible, although I'm not a doctor, just a fellow-sufferer (in the past).

I know that with us, the emotional situation improved when I finally got it into my thick head that he couldn't help it, and we stopped using anger and punishments at home. Instead, we accepted him as he was, and loved him, and didn't blame him. It took a while, but in the end it did help.

Your son's behaviour sounds outrageous, but when you think about it, it is really a defense mechanism that he seems to have developed because he is suffering and the situation is intolerable for him more than for anyone else. I understand how awful it is for all of you, but it is worst of all for him, because he is being rejected by his friends too because of the smell. That is devastating for the child. My son is traumatized by it to this day, and although he is 21, it is a subject we are not allowed to mention.

Enough -- I didn't mean to preach to you in any way. I feel for you and I know how much you are suffering, and all your family. I send you a good strong hug, and there will be others who will come along and write to you on this thread.

Hang in there! You have come to a great place, and you will get a lot of support here. What helped me more than anything else was when he was about 9 years old and I discovered a support group on the internet for parents of children with encopresis. Just "talking" about it, and discovering there were other families trying to cope with the same problem was like magic for me. It took a while, but it helped me calm down and then I was able to cope with it all better.

So "talk" to us, and maybe that will be the first step towards helping him with the encopresis, through you.

Love, Esther

 

[DazedandConfused]

I wish I had some useful insight I could share with you on this. You sound so very frustrated. I know that there have been other parents on this board that have difficult children with that issue.

This is a great place for support. Welcome.

 

[Janna]

Hi TMB,

Like Esther, I have a son too who has suffered from encopresis. I am sorry for what you're going through, at 14 years old, I can't imagine. I dealt with this with my son, Dylan, when he was 6-7 years old.

And just like Esther said, it is true, the nerves, they die. There is a signal that goes from those nerves at the bottom of the colon to the brain that tells you it's time to go, and over time, long periods of time, that signal can eventually die. My son didn't have a real bowel movement for 8 months. It was to the point nothing would come out. His colon was so impacted he was "leaking" out over, and was staining his underwear every 15-30 minutes through the day. I, too, would find them in the garbage, laying in the corners in the bathroom, etc.

Our first 3 trips to the pediatrician is why Dylan held them so long. His blatant disregard for the real issue (encopresis) is why. I heard the "he's ADHD and can't sit on the toilet long enough" excuse every time I went, even though I tried to tell him that wasn't the case. He sent me home to give Dylan over the counter stuff, Milk of Magnesia, didn't do a thing. Or it would make him so leaky he couldn't make it to the toilet for a day or two, I'd stop giving it to him, and he'd go right back to being impacted.

I don't believe the actual encopresis is probably your son's fault, although the behaviors following it obviously are. At 14 he is very well aware of what he's doing.

I saw the head of pediatrics at the hospital to get Dylan diagnosed and treated for this. I had to get very angry and aggressive with the pediatrician to get that far, but I got that far. Being nice, for some odd reason, doesn't get me very far where my son is concerned. Anyway - when we saw the head of pediatrics, he diagnosis'ed him and forced it into my brain this wasn't Dylan's fault, it's a real diagnosis, and it needs treated. He put Dylan into the hospital for 3 days, and fed him "Go Lightly" through a tube - up the nose, into the belly. The amount he would have needed to drink to make this beneficial was something disgusting, lol, so the need for the tube. They spent 3 days draining him out, and then sent him home on a strict bathroom routine, added fiber to the diet, and medicine (Miralax and Citrucel).

I am almost positive the reasons you are having problems, too, with the wetting, is probably due to this. Everything is compacted. Impacted. Your son's bladder is being pushed on and smashed by the bowel issues.

I would go back to your pediatrician and demand you be referred to a specialist in encopresis. I would just keep pushing, asking, calling around and being a pest.

 

[busywend]

Welcome! I do not have any advice. I do not have this problem. I feel for you though. It must be tough to go through.

I hope you can find a doctor to help. It seems like it has been going on so long someone would have come up with a solution by now. Although as Esther said - her son just stopped. Who knows!

HUGS!!

 

[Fran]

Could you give us a little background on your son?

My son really did not "get" that the sensation meant you go the toilet. There was no connection.
I got it through my head that it wasn't him trying to do this to me but a real reason and he didn't get why we were so upset. It's part of his disorder.

Today at 23, he can say "mom I know what you say is important but I still don't get why". It's heartbreaking how hard life is for kids who don't get the normal social skills.

Yelling doesn't work for my son. Has it worked for yours? Maybe sitting back and try working with him. I'm not criticizing believe me. I have been outraged enough times.

I hope the suggestions and the info we share will help you get through this. I know it was very humbling to think I couldn't teach my son what every other mother seemed to be able to teach theirs. I felt like a total failure.
I wake up the next morning and tried again.

 

[rejectedmom]

My son also had this but it stopped when he was about 111. He too hid it and his room smelled like an outhouse. We delt with it quietly not yelling but it did keep him from advancing in the boy scouts. He was afraid of the latrines and wouldn't go on one so camping was not an option. when he was old enough to take care of himself and do his own laundry we made it his responsibility. (around age 9) after two years he tired of the mess and got onboard. He still clogs up the plumbing but at least he gets it in the toilet. RM

 

[susiestar]

I am so sorry this is a problem yo have to deal with. I hope others have given you helpful advice. I honestly do believe that you will not get effective help until you become aggressive in demanding a referral to a specialist in this.

Can you tell us what your son's background is? Other problems, delays in development, being way ahead in development, any abuse (NOT accusing you, but many of us are helping our children heal from abuse - in my situation my oldest abused my middle child. It took a LOT of support and help).

This is truly a "soft" place for parents to land. I hope you keep coming back!

Susie

 

[Adrift]

Hi, I've been there to and strongly recommend a referral to a pediatric gastroenterologist. I would even call and ask if they are experienced working with adolescents. It's an awful thing to deal with. Like everyone else though, we found that blaming/shaming/anger not only didn't work, it made things worse. Good, good luck, you're not alone!

 

[Estherfromjerusalem]

TMB2S,

That is, in my opinion, the one definite thing that you should do as soon as possible, as others have said here: get an appointment with a pediatric gastroenterologist. Although your son maybe hardly comes into the category any more of pediatrics, since he is already 14, but I think that most of the cases of encopresis are with children, so yes, a pediatric gastroenterologist. He is the one doctor who has experience with this and knows how to deal with it.

By the way, encopresis is not an illness. It is a condition. It can be caused by many many different things, which result in constipation. Constipation is the initial cause of encopresis. The problem is all the complications that that constipation causes, both physical and emotional.

Please let us know how you are getting on. Have you made an appointment yet? Let us know when you do. And don't hesitate to come back and ask more and more questions. Any of us here who have been through anything similar and who have found ways of coping with specific problems will be only too pleased to share with you, and ease your way.

Love, Esther

 

[wakeupcall]

TMB2S, we are living the same life and so are our sons. My son is twelve and has had the same issues for ummmmmm, yep, twelve years. It's sooooo tiring. A few months ago I finally took him to a pediatric gastroenterologist with Texas Children's Hospital. She agreed he was impacted, then did an xray so that HE could see it. She scolded him about sitting on the toilet every single day, suggested high doses of Miralax and Dulcolax. Ok, so we did as she said and it was great for ummmmmm, about two weeks or so. Now we're right back where we were in the first place. It's the most disgusting thing.....we have a new house and it SMELLS!! He plugs the toilet every time he DOES go, too. I certainly don't have the answers for you as we're in the same boat. Personally I think it's a maturity thing more than anything. My son doesn't really seem to care although he has a rash that never goes away. I buy him flushable wipes called KanDoo (in the baby aisle of Target or Walmart) and keep them in the bathroom for him. It helps cleanse better than tp and it's a little soothing. I wash all of his laundry by itself so as not to transfer the odor (it's still there whether his underwear is washed or not). I keep his bedroom door shut ALL the time because his room reeks. Not sure if it has permeated the walls or if there's still underwear in there that I can't find. I pray every day that this will end.......soon! I don't know if it has anything to do with ADHD, or being Bipolar, or being immature, or whatever. I only know that I'm very, very tired of it. You are not alone.

 

[TMB2S]

My son has been to Urologist, neurologist, psychiatrist, child specialists. They tested his nerves and they were normal actually told him his muscles showed signs of endurance instead of speed by the response. The gastrointestinal specialist stated that there were no signs of a physical problem, no blockage, no nothing. The urologist stated that he wasn't draining him bladder completely and was only able to when he was asleep due to his control. The phycorist has told him to train himself to go every two hours. We bought him an alarm watch and a notebook to track when he goes. We even got a note from the Dr. to release him from class. We go every two years to do a complete work up and have never found any physical issues. He goes to a group specializing in adhd and addresses the encopresis and urisis. The psychiatrist even told him that he has to retrain him mind that even if there was a physical problem the treatment would be the same. He promised to try and has soiled on himself every day and keeps them and refuses to take them outside to the trash unless forced. He even gets mad that the other kids don’t get in trouble when he does.