Hopefully I won't get shot down for only ever talking about my colon again, but here's a brief history of my condition:
Oct 2012: emergency subtotal colectomy and ileostomy to remove toxic megacolon by laparotomy, after a short bout of ulcerative colitis which didn't respond to steroid or anti-tnf drugs. Colon perforated, infecting liver and kidneys. A week in ITU followed by the longest 6 weeks of my life on the colorectal surgical ward. Six week ileus, NG tube to stop me vomiting green digestive fluids to the tune of four litres per day, lost a third of my body weight, unable to eat for six weeks was feed by TPN via a PICC line. Laparotomy got infected and popped it's staples, leaving an 8" long by 1" deep open wound to my abdomen, took 4 months of daily packing to heal. Pics available.
Aug 2013: most of my rectum removed. Ileo-anal pouch (called j-pouch due to the way they bend it round and sew it into a pouch) formed from 18" of ileum (small intestine), stapled to remaining rectal cuff. End ileostomy switched to loop. 6hr keyhole surgery and a week on the colorectal ward again. Surprisingly not too painful.
Oct 2013: "takedown", loop ileostomy reversed and j-pouch activated. Another week on the colorectal ward. Farted and pooped for the first time in a year. Stoma site surprisingly painful, looked like a gunshot wound. Pics available.
First half of 2014: admitted to the colorectal medical ward three times (average stay 4 days), due to "cuffitis". This is inflammation and ulceration of the 5cm of rectal cuff that was left behind to attach the pouch. More prednisolone (steroids) and infliximab (anti-tnf), not trivial trug treatments, side effects fucked me up and the colitis remains. Visiting the bathroom every hour for most of this time.
Second half of 2014: day case EUA on two occasions to address fistulae and abscesses.
Two seton stitches installed and a golf ball sized abscess drained from my butt cheek, leaving a 1cm open wound about 1cm from my arse hole - it still hasn't healed. Pic available. Discover during EUA that I'm not suitable for "pouch advancement", whereby the mucosa in the rectal cuff are scraped out, removing the remaining tissue that is susceptible to colitis. Start of accept that the pouch has failed. Booked in for pan-proctocolectomy with permanent ileostomy by laparotomy in early 2015.
Thanks for the info about alternative pain treatments though. I'm hopeful this is nearly over and I won't need pain treatment for much longer. I've not really suffered acute long term pain (apart from the ileus in 2012, that was agony and I don't know if I'll be able to avoid it again this time - it's likely caused by excessive handling of the small bowel). It's mostly the discomfort caused by ten to twenty watery bowel movements a day (pretty damn sore most of the time) and occasional bouts of what seems like arthritis (another autoimmune disease) affecting my hips, knees and ankles. I'll definitely check out the author though, could be something to read in hospital in January!
Sorry for the long post. I'll bookmark it and send people here if anyone ever asks again.