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 undiagnosedcomplications. 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.