Hi, I’ve had a stoma 40 years for ulcerative colitis, it’s been fine. 6 years ago I was told I needed a hysterectomy as I had a suspect mass . This mass had been there for many years so they didn’t think it was cancer but they wanted it out despite my deep concerns. They were also going to remove the rectum as that is also a cancer risk. The outcome of the hysterectomy was disastrous - my bowel perforated , I ended up in hospital for 6 months being vein fed told i may never eat or drink again. They couldn’t remove the rectum and the mass in the womb was benign.
as time went by I was able to eat again thank God but I’ve never recovered and now have an abdominal fistula so I have to wear two bags and a dressing. I find life with a fistula difficult and wondered if anyone else had one and how do you cope. The rectum can no longer be scoped as it’s too strictured which means it’s a ticking time bomb , if and when cancer does develop, they won’t be able to remove it.
I feel I’ve been misled by the doctors, they made light if the fistula in some ways saying it would heal or could be repaired. They tried to repair it but actually made it worse plus I had sepsis and respiratory arrest, nearly died.
how do you deal with events like this. Because I was so Unwell I never complained , I’m now told it’s too late. I was told I’d recover but haven’t but it’s too late for any sort of litigation or enquiry leaving me very unhappy and feeling worthless.
has anyone any thoughts on this and advice on what you’d do, I need answers to move on. The surgeon has said he won’t operate on me again as it’s affected his mental health, I feel pretty devastated having also been diagnosed with ptsd and depression.
thank you
Thank you seaspirit, I’m off for my flu jab now will reply later 
