my story so far

In 2015 I was admitted to hospital with a kidney infection which I have suffered from since been 3 years old I was born with bilateral so kidney reflux so utis and kidney infections where a big part of my childhood and lots of time in hospital 

So in 2015 I was in hospital on iv antibiotics and all of a sudden I was unable to pass any urine or just a little dribble after two days of this it got to the point where I had 2 liters in my bladder so while I was in I was taught to do intermittent self catheterisation which was extremely painful and difficult to pass the catheter after a week in hospital I was sent home doing ISC while I waited to have some tests 

But after about 6 months it got to the stage where I couldn't pass the intermittent catheter at all and was in and out with infections needing iv antibiotics I then got fitted with a urethral catheter which was just 10 times worse and the pain was so bad I wasn't sleeping and yeah be night the pain was so sever from urethral pain and bladder spasms I got took to a and e where I had to have a lot of iv morphine but nothing touched it I even tried ripping the urethral catheter out as I couldn't take much more I ended up been lightly sedated the next day I saw the pain team who put me oral morphine liquid

About 3 months after having the urethral catheter fitted I had a urodynamis test which showed zero contractions of the bladder with around 600ml of urine in there and had zero sensation of needing the toilet so I was been referred to a urologist specialist for a sacral nurve stimulator later on in 2015 I ended up with a suprapubic catheter as I couldn't even sit down with the urethral catheter as it was that painful I was squatting or laying down 99%of the time so on December the 23rd 2015 I had my spc fitted 

Now the spc did make it so much easier to sit and move around more but with this came the horrific catheter changes which I ended up having to take morphine cocdomal and diazipam before a change due to my anxiety as I had so many painful and traumatic changes my anxiety would Skye rocket 

In 2016 in January I was diagnosed with fowler's syndrome by a specialist and put on the waiting list for the sacral nurve stimulator later that month I had my sns fitted but had zero sensation from the wires after 2 weeks I went back to the specialist who removed the dressing and wires and siad he wanted to try again as the wires had moved one had fully came out of my lower back so in march 2016 I went back to have the wires fitted again now this was done while I was awake and was extremely painful even with sedation and having to lay on my stomach and on the spc which caused awful pain and this time they only managed to place one wire as it was so painful while they did it and I spent the next two weeks including my birthday living on the living room floor as I was in so much pain from my back and the floor was the most comfortable place I could settle but sadly once again the and didn't work for me and I was now been sent to another specialist surgeon for a urinary diversion called a mitrofanoff sadly it took 5 years of extreme pain and in and out if hospital for infections having no life hardly seeing family and friends and due to their only been 2 specialists in Scotland able to do this operation and COVID it took from 2016 to the end of 2021

In November 2021 I had the 8 hour surgery I was terrified and had a few post op complications such as very high potassium so I ended up spending 6 hours in recovery due to be high risk of a heart attack and a trip to ICU for a few nights I spent a week in hospital but sadly once my stent was removed from the formed stoma it's collapsed and was only catheterised 3 times and I was readmitted to hospital to go to theater on the 1st of January 2022 to have a scope put in the stoma to see if the surgeon could fix the problem but it had closed over to much to get the scope fully in I was discharged later that day and my consultant siad I can even have the op completely redone or have my bladder removed and have a urostomy created so me and my partner have decided it's best to get my bladder removed so we can get on with our life together as we have lost so much due to my illness

So my surgeon wants to give me a few more months to fully recover from the major operation in November and he's going to get me back in to remove my bladder

So that's just my story of me and fowler's syndrome please feel free to share as it's fowler's February and the more awareness the better 

Thank you for reading