The EDS Lass writes about life with EDS, articles on relevant topics and her medical journey.
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After years seeking diagnoses, my EDS diagnosis had lead to my diagnoses of visceroptosis and meseneric ischemia. In 2022, finally, I had surgery; intervention for my structural/anatomical and vascular issues.
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).
Getting to surgery had taken years of research and fighting for healthcare. While I had previously been terrified of the thought of surgery, we knew I needed the intervention due to the diagnoses and symptom severity. The morning of surgery felt surreal.
The surgery itself and the anesthesia went well. Before I opened my eyes I was smiling; the constant, most despirate right colon discomfort was suddenly gone. I felt well, no nausea, and was off to the GI ward.
Recovery was tricky due to pain management. Hours after surgery I was screaming. I had the surgery over a bank holiday, and we were told there were only two anesthetists for the whole hospital. Finding pain medication that worked took time, and side effects.
The matron and most of the nurses were utterly fantastic, and I am very grateful for their expert and kind care.
This was the first surgery I had had. We were aware that some EDS patients have skin and healing issues post-surgery, so we were concerned about this unknown for me, leading up to surgery. Thankfully, I healed very well.
I was in hospital for nine days, then discharged home.
Within two days I had a (gentle!) day out!
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. After time and further research, including finding numerous EDS patient cases, we started seeking an ileostomy.
The EDS Lass 