Posted 9/5/2016 2:23 PM (GMT -7)
Hi everyone! I'm Sera, 22 years old and in the UK. I'm shimmying on over from the UC forum to the ostomy forum, as on the 22nd of August I completely ran out of clinical options and had a subtotal colectomy - large colon removed, anus & rectum remains with deliberate mucous fistula, like a second stoma on my left side. I was told this was performed because I was very weak and it was too risky for me to have the entire lot removed - plus, it gives me the option of reversal later should the current inflammation calm down.
I've been out of hospital for 4 days; recovering at my parents' house, which is nice. I'm not ashamed of my stoma, adjusting very well to it, no problems with the bags apart from some inflation at night. Currently using the Dansac drainable 1-piece brand for both fistula and stoma - not sure if this is just the automatic brand the NHS give or not.
My main issue right now is that I'm getting cramping, with some urgency and blood from my currently redundant rectum/anus. I know I'm only 2 weeks out of surgery, but my mind is WAY ahead of my body's recovery rate at the moment and I'm upset that I'm still getting what is essentially my UC in the portion of bowel they've left. It hurts like all hell and the prednisolone foam enemas they gave me seem to make the cramping worse, not better!
What I'd really like is to be able to speak to someone who has experience of the mucous fistula, as people keep getting confused and assuming that it's a diseased fistula, not a deliberate one, and I seem to be alone in having one!