23 Gastrointestinal Symptoms People With Ehlers-Danlos Syndrome Have Experienced
When you have Ehlers-Danlos syndrome, you know it doesn’t “just” affect your joints or your skin – it can affect just about everything. Since EDS is a connective tissue disease and connective tissue is found throughout most of the body, it is no wonder that it can also affect the gastrointestinal system.
Although more research is needed to better understand the underlying mechanisms, studies have shown there is a link between multiple EDS subtypes and digestive symptoms. According to Laura Brockway, a Specialist Registered Nurse at the Wingate Institute of Neurogastroenterology in London, EDS can affect the gastrointestinal tract because “connective tissue is present in the digestive tract and is essential to the passive mechanical movements needed to complete digestion.” If this tissue is affected, it can cause a plethora of gastrointestinal problems for those living with EDS.
Talking about these problems is not always easy, especially since not many people understand EDS. That is why we asked our Mighty community for some symptoms they’ve experienced if EDS has affected their gastrointestinal system. Ehlers-Danlos syndrome can cause many more symptoms than hypermobility and stretchy skin; it can affect the gastrointestinal system and cause extreme pain and discomfort. If you have ever experienced problems with your GI system due to your EDS (or a comorbid condition), know your symptoms are valid and we see you.
Here is what our community shared with us:
- “With my Ehlers-Danlos, I’ve experienced a lot of gastrointestinal complications. Organ rupture when I was a adolescent causing part of my small intestines to be removed, gallbladder removal due to the amount of stones I had (thank goodness my connective tissue is stretchy, my surgeon said, or else he’d have a totally different situation), healing issues from the surgery like a couple of hernias. Then throughout my whole life, IBS, gastroparesis, nutcracker syndrome in my esophagus, other undiagnosed complications. After a while my doctor and I just work with the flare-up symptom at the time and just blame it on the faulty connective tissue from my vEDS.” – Kaiden H.
- “Constantly being afraid of food. I never know what will make me sick. I rely on tube feeds now because everything seems to make me sick but I try.” – Shelby G.
- “A couple different types of prolapses.” – Carolyn D.
- “I’m told I have dysmotility and dumping syndrome, though the regurgitation I get sometimes makes me think there’s also gastroparesis instead of dumping from time to time. A lot of others I’ve talked to have this issue too. My GI symptoms include: lower abdominal bloating (looking pregnant), upper abdominal bloating (can’t wear my bra because it hurts too much), regurgitation without vomiting, acid reflux, burning pain in abdomen, slow transit through my body so that I end up stuffed inside even though my bowel movements seem normal, food allergies and intolerances, diverticulosis, nausea.” – Amy-Lynn D.
- “Gastroparesis as a result of EDS has completely changed the way I look at food. I can either eat and be in pain from having eaten, or not eat and be nauseous and hungry because I need to eat. It’s a lose-lose situation!” – Paige P.
- “I am severely affected GI-wise. I have full on GI dysmotility and dysfunction. The worst symptom I have is malnutrition from it. Malnutrition does a number on your body. At my worst I had issues with breathing, my heart was suffering from it, my nails in both of my hands and feet were turning blue, I was extremely fatigued, and I also was cold all the time and that’s just scratching the surface of the damage that was done. There isn’t much talk on how bad these GI conditions can [be] on the human body. You literally are starving to death if you don’t get adequate medical attention when needed.” – Sydney J.
- “Passing out from passing a stool.” – Sí A.
- “IBS with constipation – ever since I first started my period at 11 and now food intolerances that came out of nowhere. There were times it was almost two weeks before anything in my colon would move. There’s been many times where I’ve had to take an entire day to stay home and take laxatives. I would be so miserable! I wasn’t diagnosed with hEDS until I was 40 in 2017 and all of the stuff I was encountering was connected didn’t *click* just yet in my brain.” – Katie B.
- “Stomach ulcers. I’ve taken so many NSAIDS over the years from all the pain I’m in that my stomach is completely ruined.” – Kari R.
- “Extremely painful bowel movements whenever they occur. Aside from constipation when it finally does happen it’s stomach cramps that wake me up from sleep and come with diarrhea. IBS at its best with me.” – Kateri J.
- “Intestinal paralysis. Normally occurs mid-cycle and just after my period. I feel very shut down during this point and often laxatives cannot stimulate the bowel. No fun when my gut wakes up! The longest I’ve gone with intestinal shutdown is 20 days. Along with this issue I have trouble with the majority of my digestive system due to cEDS with hypermobility syndrome and RA factors.” – Helen H.
- “Hideous disfiguring bloating and weeks long bouts of diarrhea. Most frustrating is having to work with medical specialists who send you to other specialists after tons of tests that tell nothing.” – Irene L.
- “Almost constant lower left quadrant pain. Sometimes it’s so bad I can’t eat for days.” – Monica J.
- “A very long list of food allergies and sensitivities. If I don’t empty my bowels every time I eat, the pain is excruciating and my body absorbs the waste toxins. Lovely, that. I can only eat organic fruits, veggies, rice, no gluten, no citrus, no animal products, no corn. If I eat any one food too often, it, too, will land on my personal no fly list. So I no longer eat what I don’t prepare for myself. Even given due diligence, it hurts to digest any food at all. Working hard to avoid a feeding tube, and so far have been successful.” – LaurieAnn Y.
- “What have I not experienced? I’ve had IBS, GERD, abdominal pain, nausea, bloating, loss of appetite. Lately my meds have made my GERD worse which has affected my voice and made me hoarse the last five months. GI symptoms are one of the top two reasons I miss work.” – Lisa K.
- “Esophageal dysmotility. There are times when I can’t even swallow water. My throat literally just stops working, and I just sit there, desperately trying to swallow, face turning red, slobber running out of my mouth, it’s frightening, humiliating, and painful. There’s nothing that my gastroenterologist can do about it, I will simply continue to lose my ability to swallow until I am no longer able, and then my gastro will give me a PEG tube.” – Tammy B.
- “I had a volvulus of the stomach so had a complete blockage that needed emergency life-saving surgery. I was told it’s very rare. I often feel sick, different acid reflux and hernias.” – Jane L.
- “Motility problems, it took 40 days for a smart pill to go through me.” – Eve W.
- “My stomach hates everything. If it’s not coming out of one end it’s the other, never a pretty sight. My throat is beyond damaged, I can’t eat anything. If it’s not because of my stomach, it’s my throat; I can’t even have pepper flakes without my throat being on fire. Stomach is never settled. I can’t even drink water without it making me sick, can’t use mint toothpaste anymore or any form of mint. Can’t have any form of tea or coffee, stomach will be killing me for hours, non-stop throwing up and my chest hurting intensely.” – Angelica R.
- “If I’m not home, I constantly have to think about what I’m going to eat that won’t cause me any kind of issue, and if it’ll be worth it.” – Natalie A.
- “Extremely large bowel movements that are rock hard and the size of soda cans. They get ‘stuck’ and cause tearing and hemorrhoids. I’d say chronic constipation but it’s not the same thing as when ‘regular’ people get constipated, it’s so much worse. I’m sure you guys know what I’m talking about.” – Cassandra P.
- “Cyclic vomiting triggered by slow intestinal tract. If I start vomiting due to nothing moving in my GI tract, I will continue for hours until I can get to hospital and days of IV antiemetics. I am now tube fed as a result.” – Elisabeth W.
- “I also have gastroparesis (GP) and chronic intestinal pseudo obstruction (CIPO). I am no longer able to sustain my own weight or nutritional requirements. All GI system feeding tubes have failed. I am now TPN dependent and struggle daily with abdominal pain, nausea, spasms, distention and frequent vomiting. Still… I refuse to let this beat me!” – Lisa M.
Since Ehlers-Danlos syndrome is a connective tissue disorder – and connective tissue exists throughout the GI system – it can cause many gastrointestinal problems. These problems are real, and it’s important we shed light on just how much EDS can affect the GI tract.