zuzu8

Hi Naybee-
I'm not sure how rare this disease is worldwide, but one of the problems in general, in finding information on it is that it goes by many different NAMES.
It is also more commonly known in the USA as Intestinal Pseudo Obstruction, or Pseudo Intestinal Obstruction Syndrome, among other equally fancy descriptions. Other synonyms:

* Chronic Idiopathic Intestinal Pseudoobstruction
* Congenital Short Bowel Syndrome
* Hypomotility Disorder
* Idiopathic Intestinal Pseudo-obstruction
* Pseudoobstructive Syndrome


There is also something called CYCLIC VOMITING SYNDROME (CVS)

In cyclic vomiting syndrome, people experience bouts or cycles of severe nausea and vomiting that last for hours or even days and alternate with longer periods of no symptoms. CVS occurs mostly in children, but the disorder can affect adults, too. It is sometimes characterized as an intestinal "migraine". Here's a link for more info:
On CVS- Through a great website called MEDLINE: [url="http://search.nlm.nih.gov/medlineplus/query?MAX=500&SERVER1=server1&SERVER2=se rver2&PARAMETER=Cyclic+Vomiting+Syndrome &DISAMBIGUATION=true&FUNCTION=search&x=2 8&y=11"]http://sea rch.nlm.nih.gov/medlineplus/query?MAX=500&SERVER1=server1&SERVER2=se rver2&PARAMETER=Cyclic+Vomiting+Syndrome &DISAMBIGUATION=true&FUNCTION=search&x=2 8&y=11[/url]

On Pseudo Intestinal Obstruction- [url="http://search.nlm.nih.gov/medlineplus/query?DISAMBIGUATION=true&FUNCTION=searc h&SERVER2=server2&SERVER1=server1&PARAME TER=Pseudo+intestinal+obstruction&x=33&y =8"]http://search. nlm.nih.gov/medlineplus/query?DISAMBIGUATION=true&FUNCTION=searc h&SERVER2=server2&SERVER1=server1&PARAME TER=Pseudo+intestinal+obstruction&x=33&y =8[/url]


There is also what is considered the "definitive" book written primarily for patients with Hypomotility Disease called:

The Official Patient's Sourcebook on Intestinal Pseudo-Obstruction: A Revised and Updated Directory for the Internet Age
by Icon Health Publications

It's a comprehesive manual for anyone interested in research on intestinal pseudo-obstruction. It's fully referenced with ample Internet listings, resources for all kinds of patient information on treatment, and glossary.
This book has attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to intestinal pseudo-obstruction. You may find it useful to refer to the synonyms for it when accessing databases or talking to doctors and others..

You can get the book through Amazon or Barnes and Noble on line or through any good bookstore.
I hope the above info helps.

Good luck!

zuzu xx


[This message has been edited by zuzu8 (edited 09-04-2003).]