Philippa Fleming Activist

My friend Jenny Tate has this to say about gastroperesis. Taken from her Facebook page with permission. Jenny also has a music blog called Rock Queen Reviews.

*Ehlers Danlos Syndrome Awareness Month post*

TMI WARNING. Gastro stuff.

This isn’t stuff I’d usually post on here, as it’s obviously embarasssing, but in the cause of awareness raising, it’s worth sharing, given the impacts it has on our lives.

Due to the stretchy gut caused by EDS, cos of our weak connective tissues, many nutrients aren’t absorbed or metabollised properly, so they pass straight through, triggering nutritional deficiencies and significant issues with digestion, multiple intolerances, allergies and sensitivities and long term effects on the rest of our bodies.

For me, this is actually the very worst aspect of EDS. As the disturbance to my sleep, at 7am today proved. This is the reason I can’t eat out any more. (Besides the fact my hands are so badly affected, I need adapted OT cutlery, to be able to eat at all). For this issue alone, I’m on several meds, to slow my stomach down and help with the associated cramps. Unfortunately, I had to come off the one that was helping me absorb stuff better, as it ended up causing even worse side effects, which have possibly caused permanent damage. So now, I’m back to being almost as bad as I was, for many yrs, before taking it. Still better than feeling and being sick, constantly and suffering continuous throat burn, with no relief. Wasn’t easy to drink anyway, as it’s like drinking wet sand. Sadly, there were no other options for me, so I just need to be near the bathroom, much of the time. Especially after eating anything.

Just for general info, gastro issues in EDS can get so severe that some end up on peg feeds, naso-gastric feeds, liquid diets, specially formulated nutritional drinks and in some cases, even colostomies, etc, for life.

EDS gastro issues can also cause big probs with finding safe meds, esp for those like me, as we can’t absorb certain things, inc certain med coatings and formats. This then has a knock on effect on multi-systemic symptoms, in turn, leading to less quality of life.

A specific EDS gastro condition which often afflicts us is Gastroparesis. This is basically when the gastro and digestive system stops working, causing severe motility issues, either one way or another, inc issues with chronic nausea and sickness. In my case, my system moves too fast and struggles to keep anything in.

Many of us have to adhere to special dietary measures, such as exclusion diets, free of certain things, such as wheat, gluten, lactose, dairy, nuts, artificial sweeteners, certain additives, etc.

This is an aspect of EDS which impacts our ability to travel, eat out, sustain activities outside of home, eat safely, go out in certain weathers and climates, etc. It’s also hugely impacted by stress, related gynaecological issues, etc.

If you’re tempted to tell an EDS sufferer they look so well, or don’t look ill or disabled, then please don’t. There’s far more happening inside of us than you’ll ever comprehend.

I have had the tests for this condition. Endoscopies of both ends and a barium meal with x-rays. The endoscopy showed that I did have gastroperesis but the conformation barium meal test showed that i didn’t. However i’m not sure that the hospital i was assigned to, to have the tests knew about the correlation between EDS & Gastroperesis. Because as you can see from the video above there is no mention of EDS as a cause. This video was first posted on 21 March 2021 and i am just astounded that nearly 10 years after my tests were completed, Ehlers Danlos Syndrome is still being left off nearly every medical departments list. I had my tests in 2011 so we don’t have much movement on the EDS front being a recognised condition as far as different medical departments are concerned. But when you still have rhuematologists that think the condition doesn’t exist i’m not sure how we are supposed to get this condition recognised & talked about other than keep posting about it.

When Hypermobile EDS is involved then the typical too slow motility of food goes out the window. Because with EDS instigated gastropereisis you can have either a too fast motility (movement) of food or too slow motillity (movement) of food depending on the type of food. Which is the case for me. But it wasn’t until i started a prescription with imodium that I found out what food I was intolerant to which seemed to be everything at one point. Pipped and stoned fruit seem to be the worst culprits for the too slow motillity of food. However, there are many more foods that cause too fast motillity of food, dairy, gluten, nuts, seeds, legumes and lots of dark green vegetables and brassicas.

Here is what the Ehlers Danlos Support UK has to say about gastro issues for people with EDS. Here is a paper from the National institute for health. Here is what the Hypermobility Syndrome Society (HMSA) has to say about Gastro issues.

Since starting the medical cannabis prescription (who have included Ehlers Danlos Syndrome as a treatable condition) I have had success treating most of my gastric issues. I have stopped the imodium for the most part. I can tolerate some of the offending foods in small doses and I have at times stopped producing gas and the acid reflux was calming down. This is why I love this Noidecs oil that I am on it just suits me down to the ground. The other oils I have tried (3 other oils) just didn’t work as well if at all and I think if i was to have flower alone i would not be as well medicated as when on the right oil but I do like the supporting effect of the flower. It’s likely that the cannabis i was using at the time of testing was probably masking some of the symptoms and preventing me from getting any worse while not really controlling the symptoms because i was not on a theraputic dose.

One of the reasons why I wanted to support this legal route to cannabis is, because this looks from my perspective to be about the only area of medicine that EDS patients can get any kind of treatment that is actually making us better as opposed to trying (mostly unsuccessfully) to mask/treat our symptoms with regular licenced medication some of which come with very strict guidelines and can only be taken short term.

Since we all have an endocannabinoid system the cannabis plant is there to support our health but not necessarily by heating the plant. Some ailments can be fixed by eating the raw plant material as demonstrated in the video below.