Over the past few years the issues relating to gastro-intestinal problems in people with PWS have become more prevalent. There are many issues around this starting with constipation, gastro-enteritis and stomach necrosis each of which are described in the papers cited here. If you suspect some sort of problem with a gastro complaint, it is essential to contact your doctor, or even the Emergency Department of your hospital.
It has been observed that in most people with PWS there is an issue with slow-emptying of the stomach. It can take longer for the food to get through the digestive system and cause back-up in the bowel.
Many parents and care providers believe that because their child or adult has a bowel movement every day, this means they don’t have a slow emptying bowel. This is not necessarily true. Even with a regular daily bowel movement the intestinal tract may not empty appropriately. As the colon becomes more backed up with retained stool, the ability to evacuate stool is less effective. Over a long period of time, continuous, constant hard pushing has resulted in some people with PWS experiencing rectal prolapse. (The feeling of constant fullness and pressure on the anus or itching of the skin from irritation from bile acids present in the stool can contribute to reasons that some people with PWS insert their fingers into their anus or pick at it.)
How do we know if the individual with PWS we’re caring for has gastroparesis or a slow emptying bowel? What are the signs? What are the symptoms? What do we look for? The answers are, unfortunately, that there probably aren’t many easily recognizable signs or symptoms. Because the abdominal core muscles are generally weaker in people with PWS, the stomach can often appear to be more rounded. If food is not emptied quickly enough, the stomach can look rounded (distended) and feel “too firm” to the touch. On the other hand, for those who are taking growth hormone medication and are therefore leaner, the stomach can already feel “firm” to the touch.
Evaluation of Individuals with Prader-Willi Syndrome with GI Complaints: The GI algorithm, PWSA |USA
Constipation in Individuals with PWS, an overview by PWSA | USA
A descriptive study of colorectal function in adults with Prader-Willi Syndrome: high prevalence of constipation by Louise Kuhlmann1,2, Iben Moeller Joensson3, Jens Broendum Froekjaer4, Klaus Krogh2 and Stense Farholt1*
A paper writen about diet in light of what we now know about gastrointestinal issues in people with PWS. Rethinking the Diet (see page 6) by Barb Dorn, RN, and Kate Beaver, MSW, CSW
IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella.
Information for Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.