Short Segment
Greysen has what is called short segment hirschsprungs. There are several types depending on how long of a section your intestines are missing the "fingers" (ganglion cells). Greysen has short segment because the area missing cells was only about 4 inches long. Aside from short segment there is also ultra short segment, total colonic...you get the idea.
1 out of 5000
Seems like a lot right? The chances of having a disease mean nothing when your child happens to the "1"... forget the other 4999.
1 out of 5000 are born with hirschsprungs and it occurs more often in first born males.
Most babies are diagnosed right after birth or within the first year of their life. Hirschsprungs is a sneaky disease because if you have short or ultra short segment it can be disguised as constipation. It can cause "just enough" problems to be an issue but not to the point where you feel the need to run to the emergency room just because your child hasnt pooped in a week. And besides, no one wants to pay for an ER visit just to be told "eat more fiber". This disease is ugly, its sneaky, and as a mom of a 6 year old with it.... its just downright exhausting.
I have sat on the bathroom floor with my son for 100's of hours trying to talk him thru pushing out his poop.
I have yelled at him because he just "isn't trying" and "he's holding it in"
I have cried many tears of frustration because my son hasnt pooped in days and it MUST be posioning his body??!
I have been frustrated at doctors that brush off my concern and tell me "It's just constipation, he will grow out of it".
I have given my son adult doses of exlax and miralax for a week straight with no results.
I have given him mineral oil, benefiber, probiotics, enemas, ridiculously expensive juices with added fiber, metamucil....you name it he's tried it.
I have called the doctor crying because my son has lumps in his tummy and hasnt pooped in 16 days...yep you heard that right. 16 flippin days!!!
I have learned a lot and I hope to share it with you. Its long and its exhausting and its about poop. But if you stick with me maybe we can learn enough to help someone else. If I can make a difference for even one mom or one child then this blog will be worth it:) Please feel free to share my blog...you never know who might need it!
Greysen is always in my prayers. No child should have to go through what he has had to. People really don't understand how horribly painful severe constipation is and what it feels like to not be able to digest and process your food. I know what it feels like to not be able to poop for almost 2 weeks. I was feeling sick by day 5 and rolled up in a fetal position crying in agony by day 10 and I was an adult. I can't imagine my child going through that. Nobody takes it seriously and it is almost always a serious problem. I'm so glad you got someone who would finally listen. You have been incredibly strong through all of this. Greysen is really lucky to have you as a Mom Natalie! I wish you and your family the best and I'm praying Greyson continues to heal.
ReplyDeleteJulia you are SO right! Its awful! I often feel that people dont think of our intestines as a major organ but it is and its how we survive, nourish, and grow! Thanks so much for the words of encouragement:)
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