Encopresis

[Anonymous]

Anyone who has struggled with this awful thing, thought I would share my story in case it helps anyone else.

My son is now 13 years old. Since he was THREE, he has struggled with encopresis. If you don't know what it is, google it...its horrible...for everyone!!!

We did the entire regimen of every treatment the doctors suggested for the past 10 years. Mineral oil, mirilax, Fibercon, high fiber diet, lots of water, cleanouts, enemas, planned sitting on the toilet--all of it.

My son has been SO emotionally devastated by this.

He has had EVERY blood test under the sun. Eventually, the docs said he has anxiety.

Three weeks ago, I came to a point where I literally couldn't stand it anymore, and neither could he. He cried his eyes out.

I spent all night just googling for help-anything I could think of. Not that I had not done that before. Everything he had sounded SO much like celiac, but FOUR doctors over the past few years had tested him and he was negative. I decided to put him on a totally gluten free diet anyway. What the hell, i'll try anything (and so will he).

Miracle.

Not ONE issue since the day we started this new diet. Not ONE.

You don't understand the major life impact Im talking here. This kid couldn't spend the night at a friends house. Was anxiety ridden every time he went to the pool, to his baseball game, anything. Over the past year, he spent SO much time in his room, just miserable.

He is a different kid. This issue literally went away overnight. After TEN YEARS of struggle.

So--if you are going through this, and doctors rule out celiac--heck, TRY IT ANYWAY!!! You might just save yourself ten years and an emotionally damaged kid.....

[Anonymous]

OP I'm so glad for you. We've been struggling with enco as a result of low tone/chronic constipation for over a year. DC primarily isn't a holder but her system moves very slowly. We've been working with a GI at CNMC and progress is gl

[Anonymous]

(Whoops)

Progress is good but slow. Congratulations for hanging in there and demanding answers.

[Anonymous]

Has Amitiza been approved for children?

[Anonymous]

I'm so very glad you and your DS. My DS is only 8 but we've been going through the same thing. Lucky for us, the SN community recommended It's No Accident. DS's issue was caused by constipation. I can easily imagine how much worse it would have been had to struggle as long as you and your DS. Hugs!

[Anonymous]

OP, I am so happy for you and your child. This is incredible.
Please, do go to https://groups.yahoo.com/neo/groups/encopresis_kids/info and share your case. Lots of desperate moms there.

[Anonymous]

OP, I am very interested. Did you actually see results from day one of stopping gluten? Or did it take like a week or some days?

[Anonymous]

My heart goes out to you guys. I hope your little ones find the relief they deserve.

[Anonymous]

Did the docs only do blood tests for celiacs or actually scope him? The blood results are not always accurate. Would be worth having him scoped by GI doctor if he hasn't been gluten free for too long.

[Anonymous]

My son, who is 10.5 has had this as well. The accidents don't sound as frequent, but it's there and rears its ugly head from time to time. We did the Miralax treatments for somewhere in the neighborhood of 4-5 months and thought we were done. Nope. It came back probably 3-4 months later. Back to Miralax it was.

So, on other medically related "fronts" with the boy, we took him to get evaluated by Dr. Kannankeril at NIHDC in Bethesda.. I wanted to get the lo-down on whether we could address ADHD through diet and food allergies/sensitivities. We did the stool, saliva and urine tests. He didn't have any serious allergies (yay!) but he did have some food sensitivies (apple, banana, onion, cucumber) and a plethora of yeasts and parasites, which, btw, thrive upon and love sugars and refined carbs (not gluten, per se, but all the things where you'll likely also find gluten) SO, we did her regime (heavy pro-biotics, anti-yeast treatments, other supplements to restore the gut lining and no sugar), and have had great success with mood and slightly less good results with focus, but still, there was improvement there as well.

But what she told mentioned at the follow-up meeting was to keep an eye on the encopresis situation, that often it is connected to the poor gut-biome/gut-health (which I'd never known or suspected and I tend to research things to death). She suggested that we may not be needing the Miralax if we can get a better population of good bacteria in his gut and keep him on the right track with his diet. i.e. few refined carbs and sugar. So, while I was always under the impression that my son's encopresis had developed due to him deferring bowel movements too often and for too long (and it may well have been a contributing factor) apparently his condition (Meg-rectum - fun name, huh?) could also easily be created by his poor gut biome, or it was the two things working in concert. We're too close to the yeast/parasite treatments for me to say I feel absolutely 100% that the yeast was the culprit, but I definitely feel the yeast (and addiction to sugars/refined carbs) could easily be a contributing factor.

The important thing to note is (I think) if you want to see how this "theory" plays out with your child, be aware that it might not be gluten per se, but instead the poor gut biome created by all the things that contain gluten AND the basic sugars which are EVERYWHERE. So just cutting out gluten, may not give the hoped for result. My son, too tested negative to gluten sensitivity or celiac.

[Anonymous]

I just posted above and realized my post was inaccurate. DS only had complete overgrowth of YEAST. Can't recall exact details, but he was negative on parasites, I'm pretty sure!

[Anonymous]

17:18, thank you SO much for your message. I am not OP, but I also have a child with megarectum. He does not soil himself, but has had wetting issues for 3 years now. We have worked diligently to address this with very little success. Finally I am having him tested for a wider spectrum of allergies as well as yeast, parasites and the like. We are waiting for the results now. I am really hoping this is it! He does not have any diagnosed special needs (yet) but is definitely a challenging child to say the least. If it turns out to be yeast or an allergy that is causing all of this and can be treated, then I will be over the moon.

OP, I am so happy for you and your son that you finally have found something that works. Toileting issues are the absolute worst.

[Anonymous]

18:49... If I can find it, I will post it.. About 8 months ago, I found an article about a study that found a strong relationship between mega rectum and night wetting. My son, too suffered from night wetting for a VERY long time. (I'm the poster from the previous "yeast" posting.)

[Anonymous]

Anonymous wrote:OP I'm so glad for you. We've been struggling with enco as a result of low tone/chronic constipation for over a year. DC primarily isn't a holder but her system moves very slowly. We've been working with a GI at CNMC and progress is gl

We were also told (when our son was very young) that he was low tone. Did the PT thing. No change. Good luck to you!! I know its an absolutely terrible thing.

[Anonymous]

Anonymous wrote:OP, I am very interested. Did you actually see results from day one of stopping gluten? Or did it take like a week or some days?

No joke, results from day ONE.

He had issues every single day. I am not exaggerating for effect. I cant tell you how much we learned to revolve our life around this.

Day one, he said it was working and he felt great. I was doubtful, thinking it was coincidence. I kept telling myself that for two weeks until I allowed myself to feel hopeful.