Daisy Palmer Trust
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What is Chronic Intestinal Pseudo-Obstructions?
C.I.P.S. is a disorder of the digestive system (also known as a motility disorder) that effects the movement of contents through the intestinal tract. Although it usually affects the small intestine and large bowel, some people experience difficulties linked to their oesophagus and/or stomach. The expression 'pseudo-obstruction' is used to describe the disorder because patients have symptoms usually associated with an obstruction somewhere in the digestive tract and yet no physical obstruction is present.
Although it is rare, it can be life threatening and can often affect infants. Children/Adults with intestinal pseudo-obstruction are not able to eat normally because of symptoms that may include pain, abdominal distension, nausea, high volume vomiting, diarrhoea or severe constipation. This can result in becoming under nourished because the body is unable to absorb sufficient nutrients, or because eating is restricted to avoid unpleasant symptoms after food. Pseudo-Obstruction causes severe pain requiring opioid analgesics often on a daily basis.
In Daisy's case extra nutrition is needed as she simply cannot tolerate any form of food. This can take the form of nutritional supplements or taking nutritional 'feeds' directly in the stomach, or into a vein. However Daisy has CIPs so extreme that the last resort Total Parental Nutrition, TPN (the slow infusion of a solution of nutrients into a vein through a surgically implanted catheter) is needed. Many complications are associated with the long term use of TPN including infection and liver failure, which can be life threatening and possibly necessitating small bowel and liver transplantation.
What is Total Parenteral Nutrition?
Parenteral nutrition (PN) is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulas that contain nutrients such as salts, glucose, amino acids, lipids and added vitamins. It is called total parenteral nutrition or total nutrient admixture (TPN or TNA) when no food is given by other routes.
Daisy is fed intravenously directly via the arteries of her heart.
What is an Ileostomy?
An ileostomy is a surgical opening constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin. Intestinal waste passes out of the ileostomy and is collected in an external pouching system stuck to the skin. Ileostomies are usually sited above the groin on the right hand side of the abdomen.