What Causes Constipation in EDS?

I’ve had shit for brains lately.

Not just from the chronic Ehlers-Danlos Syndrome (EDS) brain fog and Mom-brain of raising two teens (and teens with EDS at that), but “I am sick and tired of dealing with all of our chronic constipation and I need to get to the bottom of why” brains. I was a GI nurse for a decade. We go to some of the best specialists here in the mid-Atlantic region, and the sad reality is, very few people truly understand what causes constipation in EDS patients.

So let’s think about this together. Because I’ve got some theories. There are three things we are going to talk about: two of them you probably already know. One of them might surprise you.

ONE: Much of what doctors know about constipation in EDS centers around gastroparesis: the idea that our over-stretched out guts do not have the peristalsis (the mechanism by which your gut snakes food along like a python devouring it’s prey) that they require to push food along the tract. When your food sits in your gut, the liquid begins to seep out, and what is left becomes drier and harder. New food and liquids that come along the tract can sometimes push around this bolus of hardened stool: this is why a person with chronic constipation can have occasional bouts of “the squirts.”

I know, it’s whacked, right?

The solution to the gastroparesis diagnosis becomes to soften the stool with medications such as Miralax, Colace, etc, to make it easier for the softened stool to slip along the GI tract and not fall into the cycle of getting hard and stuck. What these doctors often miss is our need to also use laxatives, which stimulate the bowel to PUSH the stool along, since we have a weakened neurological status. The argument against using laxatives is that they can stop the gut from having normal peristalsis over time. NEWSFLASH: We will never have normal peristalsis. We.need.them. (The ass kicker? The more chronic your constipation, the more stretched out your gut has been, the worse your nervous system becomes, and the less it is able to recognize the need to “go.” It takes a looooong time of staying cleared out to return your gut to normal size and your nerves to relatively normal function.)

TWO: If you are lucky, you have a GI doctor who thinks to talk to you about nutrition, for what you put in your gut in the first place VERY MUCH impacts how it handles this process. While I can’t stand people inventing food allergies, it is a fact that many of us have Mast Cell Activation Disorder (MCAD) and food hypersentivities. Additionally, sugar/simple carbs create a lot of inflammation in the human body, and inflammation is something that many EDSers struggle with (Weakly raise your hand if you have been diagnosed with “inflammatory arthritis.” OK, lower it down…you need to save your energy…) If you have chronic constipation, and you are eating a lot of bread and crap, don’t go self diagnosis celiac disease, but consider cutting back and switching to whole grains!

Unfortunately, people have ruined talking about “gluten,” so at the risk of sounding like a douche, I’m going to talk about it: white flour has all of the gluten, and none of the fiber, so it ends up sitting in your gut like GLUE. That’s why it has it’s name GLUE-ten (Not really…but it should.) The fiber part is what keeps your gut happy, active, and healthy: like a workout.

If this is all news to you, or you struggle with making better choices and you have the opportunity to work with a Nutritionist, that might be very helpful. #TheDurableDaughter has been seeing one for a few months to help her with her cyclic vomiting issues, and she is a creative force in our lives! What I love the most about her, is she never judges us: we have some truly awful days around here, and when we admit what our nutrition really looks like, she says “Well, that’s because you all are in crisis mode.” And then she helps us slowly climb out of the hole. God, I love her. I have also discovered that no matter how much useful information I have, my children hear it better when it comes from the mouths of others #OutsourceThatShit.

THREE: So here is where we need to step out of the box to guess what causes constipation in EDS patients. There may be an anatomical component to this problem that is not well understood by doctors. To begin, we need an anatomy lesson. There are two valves in your gut that you may not be aware of: they are the Ileocecal valve (IC) and the valve of Houston.

When these valves function as they should, stool flows forward, and doesn’t flow backwards. However, when the valves malfunction, and snap shut, stool does not flow forward freely (say that five times fast.) How does one know that their valve has closed? I know that mine has closed, because I get a stabbing pain right around my appendix, I bloat instantly, and when I press on the area, I feel a sharp, cramping sensation, and I hear gushing bowel sounds. (For the record, appendicitis is marked by “rebound pain:” you press on your right lower abdomen, and it hurts when you let go.) The same goes for the valve of Houston on the left side.

So, what causes these valves to have temper tantrums? That is the million dollar question. I can tell you what my chiropractor tells me about my body: What is not shown in these diagrams is the other parts of the body that lie around/along/on top of these valves – the psoas muscle, and the inguinal ligament. Both of these are critical attachments to the hip and the pelvic floor (Do you have any issues with that body part? Yeah…exactly…) I have been trying to ask about the sharp pain that runs over my hip to anyone that will listen for decades. I overstretched it in Yoga class long before I was properly diagnosed and knew better, and now my chiropractor and I know how to handle treating that area with care. He is the one that taught me how to recognize that my IC valve was chronically shutting and cramping, because my right hip was chronically subluxing, which set off a kinetic chain: hip–>inguinal ligamnet–>psoas muscle–>IC valve. Within hours of popping a hip, I would have 3 month pregnant belly.

Is it fixable? Yes. Our solution is to press on it for about 5 seconds, and have me deep breathe, which sucks so bad I can’t even describe it. But it works: after about three of those bad boys, pushing down harder every time, it opens. Sometimes it is stubborn, and requires a few rounds. I am learning to do it myself at home with a tennis ball and my amazing Theraband roller.

I realize that we are all different, so this may not apply to every EDS patient. I went through this narrative, because I need you all to understand that while modern medicine is currently unable to address many of our issues, we may have to get very creative with our chronic problems, and start putting the puzzle pieces together on our own. You may have a problem that seem purely chemical, like migraines, for example, but there is likely an anatomical component that your doctor is unaware of, such as atlantoaxial instability – YOU are the key to observing those patterns. Medical research takes SO MUCH time and money, which is why some phenomenon are observed, and some are ignored. It is incredibly complicated.

It is important that EDS patients begin to make these connections within their own body, and not just rely on the state of current medical knowledge. Because it is not enough. I have written about the importance of creating your Dream Team. This may be easier said than done, but believe me: I didn’t just stumble onto my team: I searched for and found intelligent, kind people who were willing to not only teach me things, but also learn from me. You can print out my articles as talking points, and the ones from the Ehlers-Danlos Society, and make sure that your specialists are coachable.

Do you have any GI connections to share? Leave them in the comments!

I am not a healthcare professional. My advice is based on my personal experience. If you think there is something wrong with you, please seek the help of a medical professional.