Encopresis & Incontinence; 7 year old son; any advice?

[deleted account] ( 3 moms have responded )

My 7 year old son struggles with chronic encopresis and incontinence. It's not that he's been potty trained and regressed, he's just never been able to control his bowels. We've taken him to a GI specialist and he's done tests up the wazoo. The DR says there's definitely muscle deterioration and possible nerve damage but that it's impossible to know whether this is the cause of the encopresis or a result of his megacolon and years of off and on fecal impaction.

I am so frustrated. I feel like a failure as a Mom. My other 2 kids had no issues with potty training and I'm at my whits end. I'm so afraid he'll get teased at school because of the smell (he wears a diaper or pullup to 2nd grade and has absolutely no control over his BMs).

He was potty trained for pee for awhile, but then got lazy. I guess he figured since he had to wear a pullup anyhow why bother going to the bathroom to pee.

What do I do? Is anybody else going through this?

There are some emotional issues and other things (our marriage has been shaky and we were separated for awhile; now back together but still shaky). The DR said that sometimes upheaval and change in the home and school can affect this condition as well.

I heard about Hirschsprung's (? spelling) and it sounded similar to what he's gone through, but the DR said the only way to diagnose that would be a biopsy and he wasn't sure he wanted to try that. But we've been seeing the specialist for a year and a half already and no change that I can see.

Any advice?

Oh, sorry . . . for those that are lucky enough not to know what Encopresis is, it's a condition where a child has regular, accidental, usually uncontrollable bowel movements.

With involuntary encopresis, a person has no control over elimination of feces from the bowel. The feces is semi-soft to almost liquid, and it leaks out without the person making any effort to expel it.

My son's leakage usually occurs during the day when he's the most active, and seems to be almost continuous. He's even had it happen when he's in the shower and while he's sleeping.

He wears a diaper or pull-up 24/7. He is completely independent in caring for himself. He changes himself, cleans up after himself, etc. But I know he's tired of doing so and wishes his body would cooperate. And I so wish I could help him, but I don't know how.

He also has childhood apraxia of speech and didn't speak at all until around his 3rd birthday.

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Thank you so much for your replies Leah and Shawna. At least it's nice to know we're not the only families dealing with this. It has been especially frustrating since our youngest daughter practically potty trained herself at the age of 2. And although our oldest son (11 1/2) did have some issues with constipation, it was nothing like this.

We have started taking Jeremiah to the chiropractor to see if perhaps that might help stimulate the nerves and muscles that just aren't working properly.

Our specialist seems to think that he could perhaps benefit from some counseling as the DR thinks some of it might be psychological. I don't know what to think. He did do a bit better this summer for awhile, but once we were back in school the routine was different and the progress went out the window.

He went for MRIs and all sorts of tests, but nothing showed up conclusively. The GI specialist hasn't ruled out Hirschsprungs yet; says he doesn't want to do a biopsy until we know for sure that what we're doing isn't working. I'd say that 3 years of little to no progress indicates that what we're trying (prescription laxatives and senna, etc. "Little Tummies") just aren't cutting it.

It's an all day every day thing. And all night. I'm thankful that he's independent in his self care, but I do have to make sure he cleans up well enough so that he doesn't chafe or get sore (not to mention the issue or odor/cleanliness).

He goes to a small private school, and so far they've been supportive, but I'm always worried that the kids will tease him at some point. 2nd grade they're still pretty nice to each other, but next year will be a different story if we can't figure something out.

I can still remember my mother saying, "Oh, don't worry honey, they never go to school in diapers" when I was concerned about the problems he was having early on.

Well, he did go to school in diapers. and still does, and I'm at my wits end. Sometimes he's able to go on the toilet, and other times it seems so pointless to even have him try (since the times he has success it seems purely accidental.

I wish I could offer some encouragement or support and say that it will get better . . . but I don't have any personal experience that it can or will. Geepers, that sounds depressing, doesn't it?

All the fiber in the world doesn't seem to make a difference; in fact,, sometimes he gets backed up even worse from the extra bulk.

The problem with having him go to the bathroom "when he feels the urge" is that he never DOES feel the urge. He doesn't even know when he has gone. The DR says his colon is almost 4 times the normal size from the chronic constipation, etc. and that there is most likely nerve & muscle damage. But it's impossible to tell (without doing a biopsy) whether the nerve and muscle problems are a result of the constipation and megacolon, or if the constipation and megacolon are a result of inherent nerve and muscle problems.

I have yet to have any doctor give me any hope or information that answered my questions. They all seem to be mystified and shake their heads and say, "give it some time. It will get better."

WHEN? I know there are a lot of parents dealing with really difficult physical challenges with their children. And I suppose I'm being really selfish in feeling sorry for myself, but I didn't sign up for this! he he

Alright, I'll take a chill pill for now, but seriously, thanks for the replies and keep in touch. We should really support each other because it's so easy to start to feel like you're the only ones going through this.

Shawna - posted on 12/09/2008

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Hi Becky, our boys are exactly the same.You are not alone,my husband and I have been going through this for years.Our son Dylan is 7 and a half , in 2nd grade and is in pullups.Since Dylan was born, he has always suffered from chronic constipation,when he was much younger, we would do baby enemas on him,but because of his development delayment,our family doctor said he would outgrow this,WRONG!!!!! At the age of 2, Dylan started to see a gastronologist and a dietician who changed his diet{cut down on milk,etc},and he was put on peg powder that we would mix in his drinks.Well, that caused runny stools big time. He next recieved a specialist who came to our home for the next 3 years twice a week to try to toilettrain him with us,did that work out?, NOPE!!!! All we heard was that she had never met a child who couldn"t be trained. So, then he went on to be tested for the hirschsprungs disease,he didn"t have it.Next he went on for a scope of his genitals and urodynamic testing,they showed that his bladder is the size of an adults, they don"t know if he was born like that or if his bladder has streched because of his chronic constipation.So back to square one,Dylan has never used a toilet,{Not for lack of trying as you can imagine what we have gone through],He is on a waiting list for an MRI of his spine to rule out a blockage.So that is his history,he can go up to 5 days without a streak of feces, and then he will leak and leak for days.It is so upsetting for my husband and me, we never thought that we would still be changing our son 7 and a half years later! He has a special education assistant at his school who helps him with his changing at his recess and lunch.Becky, I too have felt like I am the worst mom in the world, our friends all would brag about their children being toilet trained so early, and what could I say? If he goes outside to play, sometimes the kids will come tell me that he smells,it breaks my heart.When he is invited to birthday parties, we can"t just drop him off like the other parents do with their kids, one of us have to stay in case he leaks his stool. It has been very hard,especially when I think of his future, I know kids become cruel as they get older{peer pressure of course},and I worry so miuch for him,I would do anything for him to be normal in that sense,so life would be easier for him.I read that your son had a speech delayment until his 3rd birthday, that was Dylan as well.Wow, could we be long lost sisters? I hope to hear from you soon, it feels so good to finally hear from a mom who is going through all of this too!

Leah - posted on 11/21/2008

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My 22 year old son has Encopresis. We first noticed it when he was 18 months old. It runs in the family, although my son is the only one that has it in our immediate family. Just recently I have found that giving him about 4 fiber pills helps a GREAT deal. He even asked for an extra fiber pill because he still had a bit of an issue with it. The Dr. explained to me that the fiber not only helps with making hard, large stool easier to expell, but also absorbs the extra liquid that escapes around them. The type of Encopresis my son has is just the opposite of what your son has as far as the stool goes. My sons ability to control them has gotten better with age. Although he still has an odor issue at times, it's something we all understand that's just a part of him. As far as the colon goes, I was told that it is a muscle and will expand and shrink depending on where they are as far as smaller or larger stools. It does seem to take a while for it to shrink.



Understanding and patience are KEY. It's hard sometimes and frustrating. I've come to understand that the conditions my son has are not who he is. He's a wonderful, loving, conscientious and fun person. These other things, when they come more to the surface, are issues that are seperate from him, as a person. I get upset with the conditions, not him. I try to make sure he understands that if I do happen to get upset.



That doesn't mean that I didn't make him clean his own underwear as we were working toward training him to do things that helped minimize the leakage. He knew he had to go and would hold it too long. It didn't take long for him to understand he was the only one that knew when he had to go and he was responsible when he made a mess.



I don't know where your son is in the understanding of this condition, but I found in making my son accountable for going to the restroom when he first felt the urge, or cleaning up his underwear if he didn't, it seemed to make a HUGE difference.

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