So, I'm literally less than 24 hours post ileostomy surgery sat here in my hospital bed typing this. Hello from Stoke Mandeville Hospital.
I was diagnosed with ulcerative colitis in my early 30s but had probably had a couple of flares in my 20s which were misdiagnosed by my GP as food poisoning.
For the last few years, I had normalized my symptoms, thinking I was okay when I was actually flaring. I was taking azathioprine daily but had become tolerant of it. After a failing colonoscopy in July 2021 (I was too inflamed for the camera to go round), I was put on steroids while awaiting biologics. I started these in January 2022 but had no effect on my symptoms.
Fast forward to last week and I was visiting the toilet nearly 20 times a day. I bit the bullet and called my IBD who told me to come to the hospital immediately.
After nearly 10 days of in-hospital treatment, steroids, and Infliximab, I was told surgery was my option. As frightening as this was, I knew it was my only option.
I was hoping to get away with keyhole surgery, but it turned out my liver and colon had stuck together, so I now have a 10cm cut above my bellybutton (not that I've had the courage to look down yet).
I know my quality of life will now improve, but right now I'm feeling pretty awful and sorry for myself that I ignored things for so long. I'm hoping this site, the forums, and members will help me get through this period as a new ostomate.
Thanks for reading.