23 Gastrointestinal Symptoms People With Ehlers-Danlos Syndrome Have Experienced

  • “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.
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