Hello loves! Yes, this is the OTHER journal. I hope you like to read and are interested in me... this one is more personal and will have features, ect. There's something I would love to talk to you about and I plan on doing it tonight. This is more for awareness than anything. You don't have to say a thing. Just read and try to understand if you can.

Here's the short short version if you don't know it already. I want new parents to be aware, not to be afraid ok? I was born with a disease that noone knew about until I was 18. I have suffered a lot of pain, worry, grief, more pain and endless suffering... since I was 2 days old.
When I was 18, I finally got answers in what would be a really long road ahead of me. I got my possible diagnosis at that time, from my gynecologist. He was the one who suggested the disease after he tried to do the exam and couldn't because I was so messed up. Long story short: Since then and since my first surgery in 1997, I've had about 12 major surgeries since then not counting the smaller ones inbetween. What was my possible diagnosis? Hirschsprung's Disease....
Let me explain more...

What is Hirschsprung's disease?

Hirschsprung's disease (congenital aganglionic megacolon) is a birth defect in which nerve cells in the wall of the large intestine do not develop. These nerve cells, called ganglion cells, control the muscles in that area that normally push food and digestive waste through the large intestine. In Hirschsprung's disease, the muscles in the wall of the large intestine do not relax, which prevents waste from moving through the large intestine. This may lead to trapped stool, infection, inflammation, and constipation.

Hirschsprung's disease is diagnosed soon after birth in about 1 of every 5,000 newborns. It is more common in males than females.

What causes Hirschsprung's disease?

The cause of Hirschsprung's disease is not known, but the disease tends to run in families (inherited). The incidence of the disease in relatives of those who have it is higher than in the general population.1

Hirschsprung's disease also may occur along with other medical conditions, such as Down syndrome and congenital heart disease.

What are the symptoms?

General symptoms of Hirschsprung's disease include a swollen abdomen and constipation. The newborn with Hirschsprung's disease may not pass the first stool (meconium) until at least 48 hours after birth. Other symptoms vary depending on the child's age, when the symptoms are recognized, the amount of intestine affected, and the presence of complications. These symptoms may include vomiting, having a poor appetite and refusing to eat, and not growing or gaining weight as expected.

How is Hirschsprung's disease diagnosed?

A health professional usually first suspects Hirschsprung's disease based on descriptions of your child's symptoms and the results of a physical examination. A rectal biopsy, abdominal X-ray, barium enema, and other tests may be done to confirm diagnosis.

Though Hirschsprung's disease is present from birth (congenital), it may not be diagnosed until months or years later. However, most children born with this disease are diagnosed within the first year of life.

In rare cases, an undiagnosed or untreated case can become life-threatening. (No, really?)

How is it treated?

Children with Hirschsprung's disease require surgery to remove the portion of the large intestine that has no nerve cells. The surgery is done soon after the diagnosis is made, often within the first days or month of life. After the surgery, the child may have recurrent constipation or leakage of stool from the rectum. Sometimes these complications require further treatment.

Many children will not have intestinal problems that last forever. But most have long-term (chronic) problems with stomachaches, constipation, or stool leakage (fecal incontinence). If long-term problems occur, they are usually mild. Depending on the nature of the problem, treatment may include medicine, behavior modification, biofeedback, cognitive behavioral therapy, or more surgery.

Emergency surgery may be needed if a dangerous problem occurs, such as Hirschsprung's-associated enterocolitis (HAEC), an inflammation of the small and large intestines.


Like I said before, I am not here to scare anyone. I want there to be more awareness. I belong to a Yahoo Group and we all agree there isn't enough awareness whatsoever. I still have to fight. I always will be. God has blessed me so much and I know He has a plan for me which is why I'm still here or He wouldn't have taken me back in 1999.... I just want you to know. I want you to read more. I want you to check your children if there is an issue like this. I don't want kids of the future having to wait as long as I did because we didn't know and now all I have is small intestine and an illeostomy to keep me alive. To keep me going. This means a lot to me, which is one of the reasons I finally went ahead and shared with you. I won't go into anymore details about my life unless you ask or truly want to know. I'd have more than just this journal filled with it all lol. I love you all and I hope you understand. Please don't be afraid to say anything or to ask questions. Don't be afraid. Be aware.

_{~PLEASE be aware that I still go through a lot with this whole thing. I don't want to say anymore as far as details, but my body is not what it used to be. I am severely lacking lots of things and have to deal with that, too. If you REALLY want to know what I go through, or whatever, just note me. I will list all the vitamins, ect that I can't absorb now, and are lacking, that I have to keep myself hydrated all day long or end up in the ER, ect. It really is that serious. I'm working on my weight, so that's always a bonus... never been this big before in my life and don't plan on staying that way either. Just wanted you to know... Thank you.~And now... I'm stopping this journal from becoming any longer. Hopefully I'll have links soon, too.}







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