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Welcome to the Short Gut Wiki
Short Bowel Syndrome (SBS) or Short Gut is when the intestine is so short or non functional that it cannot provide sufficient nutrition from normal food intake, such that IV nutrition (TPN -- total parentral nutrition) typically must be provided. This wiki focuses (at least initially) on pediatric short gut, but all types and ages are welcome to contribute. TPN unfortunately causes liver disease in many patients, which is the (or at least a) leading cause of death for short gut. The initial motivation for this wiki is Omegaven, which prevents and cures TPN-associated liver disease and saves lives. Many parents have first hand experience on its benefits, and yet this information is not widely available to other parents and patients.
Please feel free to link to this page to increase the visibility of this resource for the short gut community. And please contribute your experiences so that others may benefit. (A wiki allows anyone to add or edit any of the web pages you see here: first create a new account (click link at upper right of page, or here: Special:Userlogin, then click on the "create an account" link), and after you log in, you can click the edit tab at the top of any page to make changes.).
FDA Workshop on IVFE, Oct 2013
IMPORTANT NEWS: The FDA is having a public workshop on intravenous fat emulsions (i.e., TPN lipids) on October 29th, 2013 -- there is a survey to collect information on the patient experience with IVFE's that could potentially provide valuable information for this workshop. Here's those links again:
- http://www.fda.gov/Drugs/NewsEvents/ucm369044.htm -- info about the workshop, which will be webcast
- https://cuboulder.qualtrics.com/SE/?SID=SV_79Q2irnC52R0iHz -- anonymous patient survey -- please submit results by Oct 12 to be included in the presentation for the workshop. Results will be presented on this website
- 2013 IVFE Workshop and survey results -- wiki page -- Initial Results and summary of workshop is now avail
Main Content Pages
- Getting started -- things that families were grateful to hear early on
- Symptoms -- what to expect when your gut isn't working, feeding problems, etc.
- Treatments -- medications, surgeries, diets, etc.
- Tips & Tricks -- for stoma bag changes, dealing with lines and preventing infections, g-tube care, surviving extended hospital stays, travel, etc.
- Products -- links to useful products (clothing, accessories, tubing protection, etc.).
- Etiologies -- various origins of short gut and things specific to them.
- Insurance, Finances, and Support Services -- therapy, nursing, home health care, school, etc.
- Resources -- external resources on the www.
- Recommended Doctors and Hospitals
- Stories -- patient stories (add your own!).
- Announcements -- including product recalls and current events
- Glossary -- various terms briefly defined.
Disclaimer
Important Disclaimer: This is a site created by parents & patients, for parents and patients. It is not official medical information and must not be used without further medical consultation as the basis for treatment etc. It is not moderated (though some attempt is made to keep it in reasonable shape). Nobody posting information here can be held medically or legally responsible for anything they say. We encourage people to share their unvarnished experiences, so that others may benefit. Please do not knowingly defame or libel anyone, but also please do not censor potentially important information that might benefit others. If anyone is a lawyer, please edit this disclaimer to contain more appropriate legal language.
