The EDS Lass writes about life with EDS, articles on relevant topics and her medical journey.
RECENT POSTS
Categories
Tags
art EDS Exploring health hEDS Holiday Home human-rights Ileostomy Infection informaion informed-consent law life lifestyle Medical Mesenteric Ischemia PoTS Rest rights Sun Surgery travel Undiagnosed infection Visceroptosis
In 2021, I was finally was diagnosed with visceroptosis and mesenteric ischemia; conditions that were causing severe GI symptoms. The conditions are structural/anaomtical and vascular. For years, I had been incorrectly told that diet change would resolve the issue. My GI symptoms were real, physical and outside of my control.
From 2016 my GI symptoms started and worsened. I had discomfort and pain in my abdomen, which was distended. Both medical and nutrition professionals both gave false claims and misplaces reassurances that change of diet would resolve symptoms. There was a clear lack of diagnostic approach. A systemic problem in healthcare became clear; GI symptoms being presumed to be about food/diet, rather than a medical issue which requiring intervention. Over the years I dutifully exhausted all dietary and lifestyle recommendations, but nothing made a difference. Like many patients, I was disbelieved when I reported that the suggested changes did not work. Over the following years the situation worsened.
In 2019, after another basic appointment with a gastroenterologist (who’s big idea was maybe I did not drink enough water), my family and I acknowledged that the NHS systems and lack of diagnostics were a failure, and we were forced to seek healthcare privately. Symptoms were severe and affecting every area of everyday life.
The EDS diagnosis in 2020 gave us context. After research and then requests for appropriate imaging, visceroptosis (internal prolapse of organs) was confirmed in 2021. Imaging showed internal collapse of my large colon, small intestine and stomach; a structural/anatomical issue which is not resolved by diet.
A radiologist noted changes in blood flow and further investigation in 2021 confirmed mesenteric ischemia (lack of blood flow to the intestine) when I was in an upright position.
All GI scans had revealed a consistently ‘significantly loaded colon’, and the GI diagnosis now explained why; the colon could not work properly.
The collapse of the colon and the reduction of blood supply to the intestines cause symptoms and a ‘loaded colon’.
The EDS Lass 