Please help me get my life back with surgery!

Hello, my name is Sade. I have a genetic connective tissue disorder called Ehlers Danlos Syndrome. Up until 5 years ago I was a perfectly healthy person. My issue began with persistent right sided pain, scans showed my right side colon was obstructing as well as my right kidney. At one point I was incorrectly diagnosed with a kidney stone, I had several procedures for this one being ureteroscopy, sadly they didn’t find a stone but I woke in extreme pain and was left in a bed for 3 days until my kidney function declined and they scanned to find they had ruptured my urinary tract leaving urine leaking into my abdomen (urinoma) - I had emergency surgery to correct this.

I had several hospital admissions following this with the persistent right sided pain, vomiting and bloods showing my inflammatory and infection markers through the roof, I was told I had a 30% chance of dying but they didn’t know what was wrong.

Fast forward to two years ago, I was working and felt tearing under my ribs. My abdomen looked visibly different overnight, then began the real nightmare. I couldn’t eat, my kidneys were not both obstructing and my colon stopped working properly. I went to several doctors telling them I was sure my organs had fallen down. I was laughed at and ridiculed by doctors. Yet I knew what I was feeling and did my research. Typing into google ‘prolapsed abdominal organs’ suddenly it all made sense. Visceroptosis - a very rare condition firmly linked to EDS in which the organs shift causing systemic pain and dysfunction. I went for scans which proved this to be the case, my colon especially on the right side was prolapsed and mobile. My right kidney was twisting ended up top down in the front of my tummy when I laid on my left side.

A diagnosis was made, but due to the fact doctors had never seen this condition before, nobody wanted to touch it. I was told I had EDS and therefore I should expect to be disabled. But this was more than disablement, my kidneys were dysfunctional, I was going numb due to vascular and nerve compressions and my colon was not working leaving me dependent on enemas and bowel prep. I couldn’t walk long distances at 37 years old and I was sure if I was left I would die.

Finally a surgeon agreed to do an exploratory surgery, he found that my right side colon had another rare anatomical issue, I had no ligaments in the right side, it was way too big, my transverse was deep in my pelvis when it should be under my ribs and I had cecal volvulus which is life threatening. It was agreed that we would conduct an ‘extended right side hemi-colectomy, he would take away my right side colon and the prolapsed transverse colon.

Sadly when I woke up I could feel something was very wrong, I could feel my organs tearing but I was constantly reassured it was just part of healing. At my follow up I told the surgeon I could feel the colon collapsing in my left hip, he advised me it was impossible.

Sadly my scans showed I was absolutely right, my colon is now prolapsed almost entirely into my pelvis, as it transpired the surgeon did not do what was agreed. He did not remove my huge redundant transverse colon as agreed and therefore it has prolapsed further into the pelvis and is now dragging my stomach and liver with it. I am now totally bed bound and dependant on care for all my needs. I cannot stand or walk, wash or dress,

The surgeon that did this to me has left me and refuses to correct his work, I’ve paid a total of £20k to him to be left in a bed to rot.

I have now been to one of the best Professor colorectal surgeons in the country, they advise me my situation is so rare there arent many cases in the world. I have sought many opinions all of which state I require total removal of my colon now. I require this specialist help as quickly as possible, because everyday I am left like this my situation deteriorates. My organs are ripping away day by day.

Sadly I have been victim to repeated mistakes and negligence at every turn and my life saving are now totally depleted.

I never thought I’d make a go fund me, I guess I had too much pride to ask for help. But I have spent a total of around £50k so far trying to help myself, mostly because the NHS does not possess the specialists in this condition to help me. It is too rare. If you are able to donate any amount to help me obtain the surgery I need to sustain my life I would be incredibly grateful.

Big thanks in advance for your support, sharing and donations from me and my family.