EDS Facts: #7


EDS Facts_ #1 (1)


EDS Fact: Number 84


EDS 84

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.

EDS Fact: Number 71


EDS 71

Today’s fact is about Chronic Intestinal Pseudo Obstruction which is something I suffer with and the reason I have just come out of hospital.

EDS Fact: Number 66


EDS 766

“Joint Hypermobility: Emerging disease or illness behaviour?”



“Joint hypermobility syndrome is a common clinical entity which is much misunderstood, overlooked, misdiagnosed and mistreated. It was first described in the 1960s as a purely musculoskeletal condition due to joint laxity and hypermobility occurring in otherwise healthy individuals. Some four decades later it is now perceived to be a multi-systemic heritable disorder of connective tissue with manifestations occurring far beyond the confines of the locomotor system and with ramifications potentially affecting most, if not all, of the bodily systems in one way or another.

Most authorities in the field find it clinically indistinguishable from the Ehlers-Danlos syndrome – hypermobility type (formerly, EDS type III). In >50% of patients the diagnosis is delayed for ≥10 years. Failure to diagnose and treat the condition correctly results in needless pain and suffering and in many patients to a progressive decline in their quality of life and in some to a loss of independence.”


So I’ve just read Professor Grahame’s above journal and I actually have tears coming down my face. It is so strange to read something and just think “Wow, this describes exactly how I am, how I feel and what has happened to my body”. This has explained so much to me and if you haven’t read it I highly recommend that you do, in fact it would mean a lot to me if you could read and share this to help me in my journey to raise awareness. Professor Grahame is such a fantastic man and his work for those with EDS is just brilliant.
“To dismiss disparate symptoms as ‘illness behaviour’ is, in my view, wrong and does much disservice both to our patients and to our reputation as a profession.”
That just shows how much he genuinely wants to help those with EDS. Professor Grahame you are a wonderful gentleman and thank you so much for your research into EDS and fighting with us!
Hope you’re all having a pain free day.
Love & hugs, Charlie x

Today’s hospital visit.


Today I visited the hospital for some tests that had been ordered by my gastroenterologist. He has referred me for a few tests so I wasn’t sure what to expect. He explained to me that one of the tests I was going to have was to see if my small intestine is sticking together when it gets overfull. He told me that I would have an NG tube fitted and I would purposely be overfilled with gastrograffin. The letter said I was going to have a Barium meal and follow through so I was a bit confused but I turned up at hospital this morning ready for my tests.
My name was called and I was given a lovely hospital gown to wear, you know the one which fastens at the back but has a slit down the middle so people could see your bottom at times. Luckily they gave me a lovely hospital dressing gown to wear over the top. It was a beautiful stripy one and I resembled Andy Pandy. I was led to an area and told that I would have to drink some yummy Barium and then have a number of X-rays to see if there were any strictures in my small intestine. When some of the Barium passed to my rectum I would be allowed to leave and was told it would probably take around 45 minutes.
I slowly sipped at the aniseedy, chalky drink trying my best not to throw it back up. If you’ve not had Barium before imagine someone liquidising some chalk and giving it you to drink. I drank my 2 cups and felt relief as I finished the last bit, that was until the lady told me there was still a bit left for me to drink in the bottle and it turned out it filled half of another cup. After I drank the Barium I had to give it 15-20 minutes and then have an X-ray. I took my book with me so the time went fast. I was called for the first set of X-rays and was told everything was looking good and then sent back to wait another 20 minutes. The second time I was in the X-ray room a little longer. Due to my operation my insides aren’t like a “normal” persons. I had a subtotal colectomy with ileorectal anastomosis. This is the removal of the large intestine from the lowest part of the small intestine (ileum) to the rectum. I will post a handy diagram after this post which shows what a “normal” persons insides look like compared to mine. They were struggling to see where the join between the small intestine and rectum was as apparently it wasn’t like what they had seen before. The gentleman thought that some of the Barium has passed to my rectum but couldn’t be sure. He then came at me with a big glove with a plastic spoon on the end? I thought what on Earth is he going to do with that! He prodded my tummy and took X-rays as he did this. I think this was to try and get a better understanding of where abouts in my body the Barium was. He then asked me to roll over on to my stomach which was painful but I did it. Again he took lots more images and still wasn’t sure so they sent me out again to wait another 20 minutes. This happened a few times and in the end he said he thinks that some of the Barium had gone through but was going to study the images further and write a report. He said that my small intestine was very dilated which makes sense since my diagnosis of Ehlers-Danlos Syndrome.
All in all, it wasn’t the test that I was expecting but hopefully it will get me a bit further on my journey. If you have any questions or want to talk about similar experiences feel free to give me a message.
Merry Christmas Eve Eve!