This page is dedicated to anything and everything about Short Bowel Syndrome.
Support group for parents of children with SBS and those with SBS can be found on "Yahoo Groups."
This group, that I belong to, provides a wealth of shared information from those with first hand experience with SBS. I highly recommend joining a group if you're caring for a child with SBS because of the time saving tips and research that's all there in one place.
Bathing with a PICC line? Here's a company to help make it easier:
Although they do not carry small children's sizes, they do have sleeves that can probably be cut down to smaller sizes and sealed with silicon glue.
The American Academy of Pediatrics has a wealth of information about SBS, treatments, outcomes, TPN, etc. here:
http://www.eapsa.org/parents/resources/short_bowel.cfm
Here's an interesting article from Toronto about a surgeon and his practice using the STEP operation and Omegaven (Fish Oil TPN)
http://www.thestar.com/Special/article/194260
Medical terms simply explained:
Bile: A bitter tasting liver secretion which one of the functions is to aid in the digestion of fats and stimulates the intestine to move contents through it.Bilirubin: The orange-yellow or yellowish pigment in bile. Blood carries bilirubin to the liver where it is excreted in bile. When the liver is unable to excrete bile, a person will become jaundiced due to the excess bilirubin circulating in the blood.
Cholestasis: The build-up of bile in the liver that is unable to be excreted due to impaired liver function.Parenteral: Any route other than the digestive tract, such as intravenous, subcutaneous (under the skin), intramuscular or mucosal.
Distal Duodenum: last part of the small intestine
Enteral: within or by way of the intestine.
Erythema: redness
Gastrostomy tube: "G-tube" A tube that is put into the stomach through a surgical incision through the abdomen and remains in place. Medical foods, pureed foods, medications and fluids are delivered directly to the stomach without the need for the patient to eat or swallow.
Hypotension: low blood pressure.
Intestinal Perforation: a hole in the intestine, serious and emergent as bowel contents spill into the body, causing massive infection.
Jaundice: A condition characterized by yellowness of the skin, whites of eyes, mucous membranes and bodily fluids caused by an excess of bilirubin in the circulating blood.
Midgut volvulus: twisting of the bowel, causing obstruction. Surgical emergency. Omegaven: A intravenous food that contains fish oil rather than soy bean oil for patients suffering from liver disease/failure that has saved many patients from liver failure and death.
Parenteral Nutrition: Intravenous "food" that comes in a liquid form and is given to patients who cannot nutritionally support themselves by eating regular foods.
Proximal descending colon: part of the large intestine
Respiratory Distress Syndrome: problems with breathing
Serial transverse enteroplasty procedure: STEP, surgery that cuts the intestine into a zig-zag pattern to lengthen it
Sigmoid Colostomy: opening of a portion of bowel through the abdominal wall, where a plastic bag attaches to catch fecal waste.
