GI Joe!...the unrelentless gastric EDS soldier

Gastroenterology is a word that many with EDS become fluent in rolling off their tongues. Secondary to joint instability, the digestive system can be the most problematic system in the EDS body for some.
It is now becoming more accepted amongst the sceptic medics that EDS, or Hypermobility Syndrome is more than just 'being bendy' because of this increased awareness of the severity of GI complications in EDS patients.

The GI system, or digestive tract, is one long tube made up of lots of rings of muscle. You put food in your mouth, chew then swallow. The food enters this tube of muscular rings where it is squeezed down the tube by the muscles contracting in turn. It is kind of like when you are trying to squeeze the last blob of toothpaste out of a tube.
In an EDS affected digestive tract the muscles loose their tightness as the collagen breaks down. When they do squeeze they don't do so enough to push the food along. The food then is then simple passed through the system too slowly. In extreme cases the system may not be able to move, or function enough to tolerate solid foods.

When food reaches the stomach it can take an EDS stomach longer to do its job or it can not work as well by thinking it is already full. This causes mixed signals so that the person thinks they are full or is unable to eat decent amounts of food. It can also take the stomach longer to empty. The top of the stomach might not close properly making the contents come back up into the oesophagus or the stomach (reflus) or in extreme cases, fails completely and is unable to digest solid food at all. In this case it is sometimes necessary for the person to have a PEG or GI tube fitted so they can be fed directly into their stomach.

When the food finally leaves the stomach it enters the small and large intestine (or bowel). Here it is passed along using the same muscular method. This time squeezing the food along while digesting absorbs nutrients and water and turns the food into stools (faeces) ready to be eliminated from the body.
In someone with EDS that affects this part of the system, the muscle weakness can cause slow transit, constipation, ibs, cramps, pain, and in severe cases the bowel can become unable to move the waste along at all. Finally the rectum and anal muscles can be affected which can cause incontinence or inability to expel stools.
In the severe end of the lower GI symptoms the results can lead to the person requiring irrigation treatment (inserting catheters into the rectum to fill the bowel with water to flush the lower GI system. When the top part of the lower GI system becomes affected the irrigation is sometimes done through a tube that is surgically inserted through the upper adomen wall). If irrigation fails then the bowel is removed and a stoma (colostomy/illiostomy) is placed. This is in rare circumstances when the bowel no longer functions at all.
Usually if a person is affected badly in their lower GI system they may require very large doses of regular laxatives.

Other GI issues not caused by muscle weakness in EDS can include fool allergies an intolerances, hiatus hernia (where the stomach comes up into the chest cavity), pelvic organ prolapse (where parts of the pelvic organs including the bowel collapse into the pelvic floor), rectum prolapse (part of the bowel falls out of the body through the anus), severe and chronic acid reflux, constant nausea and vomiting.

The majority of people with EDS who have GI problems will only have the milder end of symptoms that can be managed with diet or medication. However it is becoming more recognised now that the GI problems that were once thought to be unrelated are caused by EDS or the Autonomic Dysfunction that EDS patients also tend to have.

I have always have lower GI problems since birth. I suffered from slow transit and a number of impacted bowels as a child.
I have been using irrigation treatment for over a year now which is no longer really effective. My bowel has started to collapse in areas which causes immense pain and blockages that make the irrigation even less effective.

I was very lucky to meet a neurogastoentologist who has taken an interest in EDS patients. He believed at the time that the upper abdomen tube to irrigate through could be an option before bowel removal however it has taken nearly 6 months to convince my GP to refer me to him. My lower GI problems are much worse now but I hope that this is still an option by the time I finally get to his clinic.

I also have upper GI problems now. Mainly I have no appetite now. When I do force myself to eat I can only manage very small amounts and the food takes its time getting down into my stomach. I sometimes have a hard time swallowing and can feel and hear 'clunking' in my oesophagus when I have to gently squeeze and rub my neck to encourage the food down.

I had an endoscopy last week to check for anything none-EDS. I am very scared of my upper GI system failing in the way my lower system hasso I was hoping they would find something non-EDS that is easy to treat. However all they found was some inflammation in my stomach which could be caused by a bacteria they also found. Neither of which would cause my symptoms.
It looks likely that my upper GI symptoms are EDS, particually muscle weakness.

I have a couple of friends with EDS who have serious GI problems. One has the hypermobile form of the condition like me, the other has the vascular. Both have feeding tubes and have had their bowel removed.
I have lots of other eds friends who have GI problems but none have got to needing irrigation treatment or it failing like me.
It does worry me that I may be coming close to the end of the line with options in terms of what can be done for my GI problems.

This issue of my blog was intended to raise awareness of just SOME of the GI issues that can happen with EDS. I hope that it has helped others understand just how serious this part of the condition can get and encourage those with EDS who are experiencing GI problems to look into this area and ensure that your Dr understands that your GI issues could be due to your EDS and should not be ignored.

Deck the halls and all that stuff!

Hi everyone,

First thank you all to everyone who has contacted me to let me know that my blog is helping others to understand EDS/HMS and also offering comfort to fellow bendies.
Its hard sometimes to come on and write about the month I've had but now that I know that it is helping others I have more reason.

So how have things been since October?
Still waiting to be rehoused and currently living in my extremely bare flat having packed everything ready for my proposed move a few weeks ago. Still here and possibly for another few months but loving having very little to tidy or trip over!

I enjoyed a wonderful birthday, my favourite present was the entire works of Shakespeare found in an old 2nd hand book shop from my boyfriend.

So on to the health stuff...

As predicted the winter is hitting hard and its been an interesting few weeks trying to keep up with my EDS.

My physio became very concerned about my hips after they started to subluxate (partially dislocate) repeatedly during the day. An x-ray has shown 'some structural abnormality' but until the official report comes back from the radiographer they won't tell me what exactly is 'abnormal'. There are a few hip issues that are more common in EDS due to the increased friction from the movement in the joint or from the recurrent dislocations/injuries.
I see a specialist physiotherapist in a few days who needs to assess my hips and pelvis so they can refer me to an Orthopaedic surgeon who will then decide if surgery is needed.
The pain in my hips has become very bad and touching my upper pain threshold so I have finally be referred to the pain clinic.

Last week I passed out and fell badly in my kitchen. It was the first time I used my falls alarm and now realise just how essential it is. The nurses got to me quickly and I was sent to hospital for xrays and pain relief. I expected to be sent home that night but my heart and blood pressure weren't behaving and I was kept in overnight.

My heart rate and blood pressure were monitored through the night and in the morning I was told that I could possible have POTS (Postural Orthostatic Tachycardia Syndrome). This is a condition that basically means your body has become allergic to gravity. It affects the Autonomic system which controls heart rate, blood pressure, temperature control and other essential systems. There are various reasons people develop POTS including as a result of a primary condition, in my case EDS.
If the falls continue I will have to be tested for POTS.

Hearing this was not especially great as I know how bad POTS can get and also how it can cause more complications in EDS.

For more information on POTS see the links at the end of the blog.

Generally I feel really rubbish and think this has to be the worst I've been so far with EDS. However I have been through so much worse in the past and know that whatever happens it's how you approach the challenges that determine how they affect you. As usual I am staying positive (although a little harder than usual), and focusing my energy on just keeping safe and warm over the next few weeks.

I hope that you are all having a great snowy week. Please comment and continue to share your EDS stories. If there is anything you would like me to discuss in a future blog please let me know.

Hugs and prayers to everyone

Cx

More info:

What is POTS? - http://www.dinet.org/ -POTS place. info on POTS and other types of Dysautomia.

POTsgirl's video - http://www.youtube.com/watch?v=OvENfW6scZk - great video explaining POTS simply and to the point.