So it was mid-2012 when I last apologised for not updating this blog and I think 18 months between posts should be forgiven. To be honest I got worn out by constantly feeling sore and unwell.
As a quick catch up, the Infliximab worked a little, but nowhere near enough to be called any sort of cure. I continued through the Olympics in London and on to the end of 2012 to visit the operating theatre roughly every six weeks to have yet another abscess in my left bum cheek incised. By Christmas 2012, I had six or seven seton stitches and my whole cheek looked like a grossly exaggerated map of the surface of the moon, (insert weak joke here concerning popular single by The Waterboys. “I saw the whole of your ……”)
The most exciting Christmas occurrence was confirmation from my surgeon that we would now go for the nuclear option, or at least what I had been hoping to avoid but knowing was coming. That is, the final removal of my rectum in the hope that taking the source of the Crohn’s away would stop the peri-anal fistulas from reforming. And so started a frantic hunt of the Interweb for others’ experiences of similar operations. Which may be how you, dear reader, arrived at this tale, and which is definitely why I started writing the thing in the first place.
And in general, it was reassuring and helpful to read the stories of other sufferers and how they had coped with a proctectomy, but then again, as you will see, by the time I had the op, I had pretty much forgotten any of my earlier research.
Anyway, it was another uncomfortable Christmas, continuing to balance on one, (right) cheek and sitting down with great care and attention. This practice had been going on for well over a year by now and had also led to regular back problems. My offset sitting arrangements also caused its fair share of problems in public loos, especially pub toilets which are often so small it is difficult to turn around. If you have an ileostomy, (i.e a bag), AND have to balance on one cheek, sanitary visits can be tricky. In fact I could start a whole new blog about my experiences with public loo bog rolls. I find it amazing that no-one has managed to invent a bog roll dispenser which actually works, i.e. does what it is supposed to and dispenses paper.
Back to using the smallest of smallest rooms while being unable to sit squarely on both cheeks. I can now say from extensive personal research that the majority, (over 50%) of pub bogs have seats which are not properly attached to the bowl and therefore eject to left or right the non-square-sitter. Allied to the existing back pain, not fun.
So as we moved into 2013, where were we? Original Crohn’s sorted in 2004 by ileostomy, great result. Original marriage ended 2009 by wife, poor result. Four kids, new Irish nurse girlfriend, nice-ish flat, all good. Crohn’s reappeared in fistula form, left bum cheek a disaster. Pain almost constant. Paracetamol/tramadol ingestion also constant.
Eight operations under general anaesthetic in 2012 and we seemed no closer to solving the whole problem. Indeed the latest abscess now appeared so far across my cheek, that it was coming close to being a thigh abcess and not perianal at all.
And so the decision was taken to remove the bum completely.