Thursday, April 21, 2011

Raising a Child With Encopresis . . .

This is such a personal issue. I almost didn't blog about it. But then I realized how important this topic really is and how much it is overlooked in the mainstream.

My child lives with a disorder called encopresis.
If you don't know what encopresis is, you can Google it and get a wealth of information.
These sites will give you the ins and outs of the physiology of it all - how it's caused by constipation and a blockage in the lower colon. Or how it is liquefied fecal matter seeping around the blockage. Or how the lower colon will become stretched.

But what these web sites won't tell you is the emotional distress it can cause. On my child. On my family. On me. On her educators, sitters, grandparents, ANY one she comes in contact with.

They don't tell you about the embarrassment you will feel as you walk into a store with your child as they smell like a bathroom, but don't notice it because they're so used to it they can't sense it.

They don't tell you the frustration you will feel as you help your child clean themselves up for the 1000th time, or throw away three pairs of underpants in one day.

They don't tell you the anguish you will feel ans your baby girl cries on your lap, saying her friends don't want to play with her because they tell her she smells bad.

They don't tell you the anger you will feel at your child's school for not doing enough to ensure she sits on the toilet during school hours. Or the anger at her doctor for telling you to do the same treatment over. and over. again. and again.

They don't tell you about the cost of medicines, doctor's visits, x-rays, new clothes, new sheets . . .

Every day I look at my child - my unbelievable blessing - and I pray for God to PLEASE make my baby be normal again. My soul is crying out in anguish for this problem to just go away.

It is so hard to raise a child with a problem like this.
No one likes to discuss it.
No one wants to know about it.
Everyone wants to hide it and pretend it doesn't exist.

But it does exist, and it's very visible.
Thanks for listening.

15 comments:

The Mrs. said...

God Bless you Jen! I know you have been dealing with this for quite sometime. I know it is hard for you and your little girl! Prayers for you!

Morgan said...

Whew ... that's a doozy! Thanks for sharing your heart and may God bless you for your patience, endurance and your tenderness for your little girl.

Visiting from SITS :)

Michelle Saunderson said...

Sorry to say that I never even knew that anyone could have that. How terrible. You both need a hug.

Shrinking Jeans said...

Oh Jen! My heart goes out to your daughter and to all of your family!! I hope that you find answers and a cure soon for her.....

Brenda said...

I came here from the Yahoo Forum on Encopresis - and I know exactly how you feel as I'm going through it too. I have to put it all into perspective and realize what a wonderful daughter I have, and she is so smart and she isn't mentally disabled or so physically disabled that she can't do most things. She is a terrific girl, and with small steps, this affliction can be dealt with. But yes, it is SO frustrating. Thanks for blogging about it.

Anonymous said...

Just like the other mom, I came here from the yahoo forum too. Thanks for blogging. We have been dealing with this for over 2 years now. It is very hard, but our kids will be stronger than the rest of the so called normal kids. They have a better perspective in life because they already know why God did not make every one and every thing so equal, easy and normal - all fingers are not equal. Hang in there! I hope and pray its all a matter of time for all of us.

Kmama said...

Oh wow. I'm so sorry to read this. I don't know much about it, so I will have to read up on it.

You are so brave to share.

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Cristina said...

Thank you for posting about this! I am the moderator of the Yahoo Forum. I started it when i was at my wit's end with my older son who had this condition. Now my younger son also has this condition and I am still at my wit's end 2 years later! I don't know why God gave us these trials but I only pray that He gives us the strength to get through it. It's hard to put into words how difficult it is to live with this. If nothing else, we are learning the virtue of patience! May God bring an end to this soon for your family.

Cristina said...

p.s. here is a link to my post a couple years ago. My older son is doing much better now (he's now 5) but we haven't "cured" my younger son of the holding habit (yet)! The frustration I felt then is the same as what I feel now, though I am encouraged now to know more people online to talk with who are going through similiar experiences. I am going to try Soiling Solutions soon.

http://mommyofftherecord.blogspot.com/2009/02/this-is-hard.html

Anonymous said...

I only learned about this condition tonight.I went online searching in desperation for a reason my 8 yr old son still soils himself. thank you for posting about this. Its so comforting to know we are not the only ones dealing with this.

Steph said...

I know this is an older blog posting, but I am a fellow blogger who has a site all about my daughter's experiences with encopresis and how we were able to overcome it...naturally, without laxatives, etc... if you want to read my story, you can find me at www.momsguidetoencopresis.com

Have a great day!

Stephanie

Anonymous said...

My daughter has this and after reading a lot on the Internet and searching for an alternative to the laxatives, I have taken her off dairy. I have cut the laxatives significantly and she is no longer having accidents. First time in forever. It might be worth trying. Gluten can also have the same effect.

ken sue said...

My soon to be 9 year old son has been stuggling for 4 years, ADHD, ODD and encopresis. we have been through counseling for the ODD and touched on the encopresis. we were experiencing power struggles at home(I am a single mom of 2 boys)and were working on communicating and less aggression. i felt I needed to conquer the bad behavior first, unfortunately my ex husband wants the soiling to stop. i told him there wasn't a miracle drug for this. i am trying to be patient with my son and give him the time he needs and also trying to avoid him slipping back into the angry little boy that he was. how can i get my ex to understand that yelling and punishment is not the answer?

Elizabeth Fernandez said...

Oh my God. I am actually tearing up. Everything you described, everything you said, I feel it all. My daughter is 5 years old and was diagnosed with functional encopresis almost a year ago. I am a single mom with a very loving and supportive family but this has been the most challenging thing in the world. Like anything else, no one can really understand how hard it is unless they live it. I am looking to be in or start a support group where my daughter can meet more children like her and I can have friends that really know about our lives. I live in Springfield Illinois. If anyone knows anything about an existing support group or someone else looking, please email me at efernandez6608@yahoo.com. Thank you Jen for your amazing strength in speaking of the unspeakable. You are a Godsend for me and my daughter.