A to Z of Ehlers Danlos Syndrome: C is for Constipation

Constipation is very common amongst the Ehlers Danlos population. Often the diagnosis is Functional Constipation, also called Chronic Idiopathic Constipation. This is constipation that does not have any obvious cause, such as an infection or a metabolic disorder etc. I came across a study that found that functional constipation effected 36% of the Ehlers Danlos patients studied, and negatively impacted their quality of life. The prevalence of functional constipation in the general population is closer to 12%.

Although functional constipation is said to be ‘idiopathic’, ie without a known cause, it is considered likely that the constipation in Ehlers Danlos Syndrome is caused either by laxity in the gastro-intestinal system, by defects in proprioception or as a result of dysautonomia. Or, more likely, a combination of the above.

Chronic constipation, like other chonic conditions, lasts a long time. In my case, I’ve been constipated my whole life. The only times I haven’t, is when I’ve had a GI infection, and then had the opposite problem. Personally, it hasn’t impacted me as badly as it impacts some. Anecdotally, I’ve come across countless EDSers who regularly go ten or more days between bowel movements! As you can imagine, this can be quite debilitating. And as most of us were born constipated, it can be devastating watching our EDS children suffering with this condition.

And so, what can be done? Many of us regularly rely on stool softener so such as Movicol. Others swear by prune juice. Some take laxatives such as Dulcolax (which for me leads to intense stomach cramps and diarrhoea, even at low doses). Fibre does not seem to have much effect and sometimes makes things worse. Good hydration also seems to be important, especially for those of us with dysautonomia. A lot of it seems to be trial-and-error, seeing what works for us individually. Personally, strong coffee helps me a lot. And trying to stay as calm and relaxed as possible.

I will be returning to gastrointestinal symptoms in later posts. But thought I’d get some potty talk covered off early on! A fun (?) hashtag on Twitter, often contributed to by EDSers, is #prayforpoop. Need I say any more?!
[image is of a brown background, with the words “C is for Constipation” written in black. ]

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