Two weeks later, with a stitch dangling from my 'you know what,' I saw my surgeon. He apologized for what I had been through and suggested that maybe a Seton suture wouldn't be a suitable way to repair my fistula in hindsight, as it was too deep and I obviously wouldn't be able to tolerate the tightening. We discussed options regarding surgery, but at that point, I decided to let the suture remain in situ as it would allow drainage, prevent abscesses, and wasn't really causing any difficulties. However, within maybe a further couple of months, this stitch had deteriorated and fell out, so I had to go back to get another reinserted under anesthetic. We tried several different Setons, rubber bands with beads, thicker suture materials, but some of these only lasted 24 hours before floating to the surface of the bath - I think I had 8 anesthetics to keep putting these in, and at that point, I'd had enough. Work was getting a bit edgy about the time I had to have off for hospital visits, etc., and I felt that having an anesthetic every few weeks wasn't really very good for me and wasn't the way forward .....
At the next clinic, I broached the subject of surgical repair. It was decided that an 'advancement flap' repair would be tried. So in 2003, I had the first surgical repair. All seemed to be well; I didn't even contemplate the possibility that it might not work. However, at 5 days post-op, back at home, I went to the loo to find that I was passing stool vaginally - the wound was infected and had broken down. Unfortunately, it would be at least a further 3 months before the site had settled down enough to be repaired again..... So there I was, still reasonably healthy, but fecally incontinent through my vagina until I could be operated upon once more.
I think I had another repair, which also failed due to wound infection, before it was suggested that I should have an ileostomy. This would be a temporary loop ileostomy and would divert stool away from the area to facilitate wound healing. I agreed to this, and in 2004, again thinking that the next time all would be well, I had the 3rd repair. Despite the ileostomy, the wound broke down once more. I spent the next few months coming to terms with the ileostomy, dealing with trying to find the right bag to fit, the damn thing popping off while shopping, out with friends, having meals out (always between the main course and dessert - I think it was trying to tell me something!), etc., etc.... you know what it is like! On top of this, the loop ileostomy was malfunctioning at times - stool would bypass the loop, I would have normal bowel movements, and it would also ooze from my vagina. I was having to clean myself several times a day and felt dirty and disgusting. At clinic, I asked my surgeon, 'If I were your wife, where would I be going?' He suggested a surgeon in Oxford and referred me there.