F.A.Q.
Frequently Asked Questions

 
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Frequently Asked Questions

  1. How do I know if I have Hirschsprung's ?

  2. Where can I find a doctor who specializes in HD ?

  3. Is Celiac Disease related to Hirschsprung's Disease?

  4. Who are you?

  5. What is Hirschsprung's Disease ?

  6. When is the best time to visit the doctor ?

  7. Is Hirschsprung's curable?

  8. Can you catch HD from someone else?

  9. What were your initial signs of having HD?

  10. Is there testing that I can have done to see if my baby has HD before it is born?

  11. How Do I contact you if I have more questions?

  12. Why doesn't your site have any HD pictures ?

  13. How can I donate directly to you?


How do I know if I have Hirschsprung's ?

The only way to know if you have Hirschsprung's Disease is by being tested.

HD usually is suspected based on symptoms and a physical exam. During the physical exam, your health professional will check your child's abdomen for bloating and excessive stool in the intestines and rectum.
If Hirschsprung's disease is suspected, the following tests may be done:

  • Rectal biopsy. This is the most useful test for diagnosing Hirschsprung's disease. For this test, a small piece of rectal tissue is removed and examined under a microscope for the presence of nerve cells. If nerve cells are not present, Hirschsprung's disease is diagnosed.

  • Barium enema. In this test, a whitish liquid (barium) is inserted through the rectum into the intestines. The barium coats the intestine to make it visible on an X-ray. If Hirschsprung's disease is present, the X-ray will show a swollen portion of the intestine followed by a narrowed area. However, a barium enema may fail to reveal signs of Hirschsprung’s disease if a child is younger than 3 months of age or if only a small part of the colon is affected. A barium enema is not done if the doctor suspects that the colon has swollen to many times its normal size (toxic megacolon).

  • X-ray of the abdomen. This test provides a picture of structures and organs in the abdomen, including the intestines.

  • Anorectal manometry. In this test, a small tube is inserted into the rectum to measure how well the muscles in the anus are working. If the muscles do not relax, it may indicate Hirschsprung’s disease. In newborns (younger than 1 month), this test may not be accurate. Also, a false-positive test result may be obtained if the colon is stretched for another reason, or if the child cannot or does not cooperate with the testing.

If your doctor hasn't tested you for it and you want to be tested just ask him or her. They may not feel that the test is necessary, but if you still want to be tested they should honor your request.

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Where can I find a doctor who specializes in HD?

Check with your physician to see who he recommends. If he doesn't now of any then check with your local hospitals and the surrounding area hospitals. By doing that you should find a doctor or at least a specialist.

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Is Celiac Disease related to Hirschsprung's Disease?

NO. I have noticed that there are symptoms that are pretty close to the same. If you do not know what Celiac Disease is you can get a description by clicking here.
If you are having problems now and think you may have HD it isn't a bad idea to be tested for celiac disease first. The test is pretty easy. All they do for the first initial test is take blood. If the blood test comes back positive then they will need to do a biopsy. That is all I really know of this. To learn more visit the Celiac Disease website.


Who are you ?

I am just someone who has Hirschsprung's Disease. I have created these pages for informational and educational purposes only.  I am not a medical professional so you if you are looking for sound advice I suggest going to see a medical professional/specialist.

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What is HD ?

HD is a shorter way of saying/typing Hirschsprung's Disease. I don't know if that is how they do it in the medical field, but some of us who have it kind of adopted the short version since we say it/type it so much.
To get a better idea on what Hirschsprung's Disease is please visit my other page that has the definition of it.

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When is the best time to visit the doctor ?

Any time is the best time. If you are feeling ill in any way it never hurts to get  a professional opinion.

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Is Hirschsprung's curable?

One you are diagnosed with Hirschsprung's Disease in my opinion and many other it is always with you.
However with some medical Insurance Companies if you have had a surgery where the problem has been corrected (in this case usually severe, continuous constipation), you can report that as corrected if you have had a surgery for an ostomy or even a reversal of an ostomy.

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Can you catch HD from someone else?

HD is not transferable like the flue. In my opinion I feel that it is hereditary through genes. Many doctors say that's true then there are some that say it is just luck of the draw.. In many cases there is a trace of HD in the family somewhere.  It may have been four generations back, but it was still there. You have to remember that there was no name of Hirschsprung's Disease way back then. So there was no way to detect that it may be hereditary.

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What were the initial signs of having HD?

The initial symptom is usually severe, continuous constipation . A newborn may fail to pass meconium (the first stool) within 24 hours of birth, may repeatedly vomit yellow or green colored bile, and may have a distended (swollen, uncomfortable) abdomen. Occasionally, infants may have only mild or intermittent constipation, often with diarrhea.

I was only three days old so the only way I was able to find out what signs I had was through the doctors reports. The sign that I was giving them was that after I was born for the first three days I did not have a bowel movement at all. That is when the doctor decided to test me for Hirschsprung's Disease.

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Is there testing that I can have done to see if my baby has HD before it is born?

There is no kind of testing that you can do to see if your unborn child will have Hirschsprung's Disease that I personally know of at this time. However I did hear that they are working on a way to do some testing, but I really don't know anything about it.
There is testing that you can have done a few days after the baby is born. Usually there has to be a reason for them to do any tests. You should ask your doctor about more information on the testing that they can do and how early they can do it.

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How do I contact you if I have more questions?

Just visit the Contact page and there are a few options there. 

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Why doesn't your site have any HD pictures ?

It is really hard to get an image of what HD actually looks like. This would be something your doctor would have to do while your or someone was in surgery.
However, I should have some images posted somewhere in this site with me having an ileostomy.
If you have any images you would like to provide or even diagrams please contact me.

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How can I donate directly to you?

Just click on "Donations" in the right side menu or click on the "Donation" button. On the donations page there will be instructions on how to donate to me and any of the charities that I have listed.

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