The EDS Lass writes about life with EDS, articles on relevant topics and her medical journey.
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I am seeking surgery to resolve the effects of structural/anatomical and vascular issues (visceroptosis and mesenteric ischemia) which causes significant symptoms.
The EDS diagnosis in 2020 had gave me 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. Imaging also demonstrated mobile cecum syndrome, intestine mobility causing intermitting twisting of the organ (volvulus), explaining numerous incidences of severe pain and A&E attendance.
In 2022 I had GI surgery. Part of my right large colon was removed with the remainder stitched (pexied) up, and my stomach was stitched up (gastopexys).
The colon surgery resolved the intermit severe pain episodes and the stomach surgery vastly improved post-eating symptoms. Unfortunately but unsurprisingly, it did not resolve the loaded colon situation.
The issue of ‘significantly loaded colon’ remains and causes severe discomfort. All non-invasive attempts have been explored and exhausted over previous years. Intervention is needed to address the effects of the known issues. Given the anatomical nature of the diagnosis and success in other similar cases, surgical intervention is sought.
Similar cases (ie EDS patients with visceroptosis and/or loaded colon) exist in literature and online, with patients who had surgical intervention (an ileostomy or resection to significantly reduce the amount of large intestine), reporting great increase in quality of life.
Like myself, many of these patients had experienced delays and previous encounters of resistance to surgical intervention from consultants who viewed GI surgery as only for the standard reasons (cancer, Crohn’s, UC etc).
As well as a list of cases of EDS patients who benefited for ileostomies, a number of medical and scientific professionals acknowledge EDS patients can benefit from ileostomies. Gensemer (2024) states: ‘If the entire colon has prolapsed, the patient may benefit from an ileostomy to bypass the colon entirely.’
If you are patient who has had a stoma due to EDS GI reasons, are also seeking one, or are a medical professional, please get in touch if you wish.
The EDS Lass 