I had mine removed 7 years after my first ileo. I was having problems with leaks as well and also my surgeon said it should be removed at some time as I was never going to have it reversed as colon too badly diseased and that it could become cancerous if left there permanetely.
Puddney, when I was first dx with CD I went in for colonscopy and was due back at work next day. When I came round from sedation (they tried to do it at my GP surgery first before this and once they had scraped me off ceiling from the pain, said sedation may be good idea but heard them talking and they thought I was just being hysterical due to my age as I was only 18yo) this dr said we are admitting you as you have CD and I will come and explain it to you tomorrow when you're more awake. The only bed they could find was on a obs/gyn ward. So you can imagine what all the other patients thought, young very skinny girl walking around clutching stomach, they assumed I had come in and had abortion like all the other young girls in there. Once the other ladies knew, bless them they took care of me and as I was on steroids gave me their biscuits and desserts to fatten me up!
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.