Sammy Jones

Hi I'm Sammy, I'm a 28 year old disability advocate from West Lancashire. I am married to my childhood sweetheart Kieran, and live together in our newly accesible home with our three cheeky sausage dogs. I fell ill a year after we got married back in 2018. It has been a whirlwind of hospitals, surgeries, specialists all over the country, months long stints in hospital and we are still searching for a definitive rare diagnosis. My illness has unfortunately effected so much. First to be effected was my nervous system, and this is when I ended up relaying on a wheelchair full time due to neurological symptoms and weakness. I then one evening went into sudden retention and could no longer wee on my own. This turned out to be bladder failure which is when i needed a surgical catheter placing. There were lots of issues with the catheter around infection, and in just less than a year i became resistant to most antibiotics. It was a really scary time in my life being taken in and out of hospital. It was at this point that my consultant told me that he needed to remove my bladder and create a urostomy bag. This was such a shock and was the start of my extensive sugeries. Not three months later was when I ended up in hospital for over four months. This time I was diagnosed with stomach paralysis (gastroparesis) and now require to be tube fed for the rest of my life. I had a surgical jejunostomy placed in September where I ended up in intensive care and faced many problems throughout my recovery. I still have hurdles to face as I am currently waiting for a second stoma bag surgery in the form of a ileostomy, as my bowels do not function at this point either. It goes without saying that this has been an incredibly difficult time in my life, but thats exactly where my Instagram came in. I didn't see anyone like me online, which lead me to set up my own instagram account with the hope of filling that void. Now, I have over 14 thousand followers and passion for raising awareness.