The feedback I have received from my EDS Facts has been great. It is so good that people are finding them helpful! May is EDS Awareness month and I have been thinking for a while what kind of awareness content I can create so that I can do my bit. I’ve just uploaded a new video to my YouTube channel and it is a video version of the EDS Facts I have created. I really hope that this can help spread awareness and get people to understand the invisible battles that so many of us go through.

Please like, share the video, comment your feedback and subscribe to my channel to help me on my mission to raise awareness of Ehlers-Danlos Syndrome. Together we can raise awareness and hope for a better future, and maybe even a cure, for those living with EDS.


EDS Fact: Number 9


EDS Facts_ #1 (1)

Intestinal Pseudo-Obstruction


I thought that I would write a post about intestinal pseudo-obstruction seeing as though it has been the reason for my most recent hospital admissions.

What Is Pseudo-Obstruction?
Intestinal pseudo-obstruction is a rare condition (like I needed any more of those!) in which symptoms resemble those of intestinal blockage without there being a physical obstruction. It can be an acute condition where it comes on suddenly or it can be chronic and long-lasting.

What can cause it?
Primary or idiopathic intestinal pseudo-obstruction is when the condition seems to occur by itself. It is usually caused when there are problems with the muscles, nerves or interstitial cells of Cajal. This stops the normal contractions of the intestines so the food, fluid and air has problems moving through. Intestinal Pseudo-Obstruction can sometimes be caused by mutations or changes in genes and these gene changes could also account for bladder symptoms and muscle weakness that sometimes accompany the condition. It can also be caused by mitochondrial neurogastrointestinal encephalopathy, where the structures in cells that produce energy do not function correctly.
Secondary  intestinal pseudo-obstruction is when the condition develops due to another medical condition. This could be anything from surgery, infections, medications and other diseases such as, you guessed it, Ehlers-Danlos Syndrome. That pesky condition seems to get everywhere hey!

What are the symptoms?
The symptoms often mimic that of an intestinal blockage including; abdominal pain, bloating, constipation, diarrhoea, nausea and vomiting. Over time people can develop problems with their esophagus, stomach, or bladder and it can cause malnutrition, bacterial overgrowth in the intestines, and weight loss.

How is it diagnosed?
It is usually diagnosed by a gastroenterologist. They take medical history, complete physical examinations, imaging studies etc.

How is it treated?
Treatment varies per individual but it is often treated with nutritional support, sometimes including Enteral feeding or Total Parenteral Nutrition, medications to try and help control symptoms and avoid complications, dietary adjustments and decompression to remove gas from the intestines. Sometimes it has to be treated with surgery to remove sections of the intestines, however surgery can worsen the condition. When other treatments have failed and in extreme circumstances a small intestine transplant may be an option.

 I have a few more tests coming up and then I will have an appointment with my gastroenterologist to discuss what the next steps will be for me. I will keep you updated.