The EDS Lass writes about life with EDS, articles on relevant topics and her medical journey.
RECENT POSTS
Categories
Tags
Amélie art Croatia Diagnosis Diagnosis denied EDS Exploring Finland Food France health Healthcare System Issues hEDS Helsinki Holiday Home human-rights Hvar Ileostomy Infection informaion informed-consent Island law Lido life Lifestyle Mallorca Medical Mesenteric Ischemia NHS Failure Nostalgia Pairs Paris PoTS Recipe Rest rights Sea Sun Surgery Swimming travel Undiagnosed infection Visceroptosis
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 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. I had both upper GI and lower GI surgery, with two surgeons present. Part of my right large colon was removed with the remaining right colon was 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; a pain which had been resent in the low right colon was gone. I felt well, had no nausea, and was off to the GI ward for recovery.
Recovery was tricky due to pain management. The following day post-sugery, when the spinal injection worn off, I was crying out due to abdominal pain. I had the surgery over a bank holiday, and we were told when we again requested urgent pain relief that there were only two anesthetists for the whole hospital. Finding pain medication that worked took time, and side effects. I did go into surgery knowing pain management can be tricky for EDS patients. As stated above, I knew I needed the surgery.
The matron and many 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. The wounds from the 9 or 10 ports which were used for the laparoscopic (key hole) surgery healed incredibly well.
I was in hospital for nine days in total, then discharged home.
The stomach surgery had vastly improved post-eating symptoms, which was fantastic and a great relief. I even ordered food to home while my partner and I drove home from the hosptial.
Within two days of being discharged I had a (gentle!) day out!
Postprandial (post-eating) symptoms improved so significantly straight after surgery; it was incredible. I had missed food, and quickly went from 57kg to 71kg (the most I have ever weighted!).
The improvement demonstrated that visceroptosis of the stomach had been a symptomic presentation in my case, and showed that approrpriate surgical intervention can make a huge difference. Having postprandial symptoms, especially lattery when it was severe, had been so distressing and concerning, but also upsetting as I love food.
The surgery also immediately resolved the lower right pain. Years later, it remains resolved.
Overall, I was so pleased how the surgery itself and the recovery went. The pain management was difficult, but was ultimately only for a few days. There were so many unknowns prior to this surgery, as it was my first, but the lack of complications and excellent healing are positive. We knew at the time that future surgeries were likely.
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, I started seeking an ileostomy.
The EDS Lass 