We are delighted to have teamed up with the Pseudo-Obstruction Research Trust and will be donating 50p from every order we receive to their charity to help fund the urgent research needed into Chronic Intestinal Pseudo-Obstruction (C.I.P.O). This incredibly rare disease is only understood by a handful of doctors in the world. It is a charity that is very close to our hearts and this small donation is only the beginning of the fundraising we hope to provide to P.O.R.T. in the future.
C.I.P.O Chronic Intestinal Pseudo-Obstruction
C.I.P.O is a disorder of the digestive system (also known as a motility disorder) that effects the movement of contents through the intestinal tract. 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. It is caused by problems with the nerves and/or muscles of the gut impairing peristalsis, which propels food, fluid and air through the gastrointestinal tract, meaning the peristalsis is uncoordinated, weak or even absent.
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, diarrhea or severe constipation.
In many cases extra nutrition is needed and this can take the form of nutritional supplements or taking nutritional ‘feeds’ directly in the stomach, or into a vein. As a last resort Total Parental Nutrition – TPN (the slow infusion of a solution of nutrients into a vein through a surgically implanted catheter) is considered, although complications associated with the long-term use of TPN include infection and liver failure, which can be difficult and life-threatening sometimes necessitating small bowel and liver transplantation.
What is P.O.R.T.?
The Pseudo-Obstruction Research Trust (P.O.R.T.) was formed in February 2006 by two families whose children have died from Chronic Intestinal Pseudo-Obstruction (C.I.P.O.) or are still suffering from this illness. The aim of the charity is to fund research into C.I.P.O. and raise public and professional awareness into this serious and sometimes fatal illness. The Pseudo-Obstruction Research Trust (P.O.R.T.) was formed by Sue Stewart (Chairperson) and Sonia Frost (Trustee) in memory of Sonia’s daughter Emily Jasmine who passed away in 2005 from complications of C.I.P.O aged only 2.
P.O.R.T.’s mission is:
- To fund research into Chronic Intestinal Pseudo-Obstruction, Dysmotility and resultant Intestinal Failure.
- To find the underlying basis of these conditions.
- To be able to classify patients via phenotyping.
- To improve treatment and management options for these conditions.
- To research and find treatments for visceral pain.
- Develop knowledge of CIPO and support education in relation to it.
- Provide support to patients suffering from this disease and their families.
If you wish to make a donation directly to the Pseudo-Obstruction Research Trust (P.O.R.T.) please visit their website port-charity.org.uk