About three years ago I was diagnosed with severe ulcerative colitis, and about two weeks ago I had surgery which left me with a temporary ileostomy. This is actually my second temporary ileostomy, I got my first less than two years ago as a result of ulcerative colitis. My first surgery was an ileostomy in August 2011 to remove my colon which, as my doctor astutely told me, hated me and wanted me to die. My second big surgery was in October 2011 during which the ileostomy was reversed and I went back to going to the bathroom like a normal person. However, I still had a lot of frequency and pain, and never really recovered like I was told I would. Fast forward about two years and two doctors later and, lo and behold, all my problems were being caused by ulcerative colitis. It turns out that my first surgeon left in 4 inches of rectum which had become diseased (I don’t know why he left it in). My new doctor, Dr. Murphy, said that I needed “pull down” surgery to remove the rectum and promptly shipped me off to the Cleveland Clinic in Florida for a consultation with the best colo-rectal surgeon in the country.
My doctor in Florida (Dr. Wexner) scoped me and confirmed Dr. Murphys findings and scheduled me for surgery within a few days. Going into the surgery I didn’t know whether the ileostomy would be permanent or temporary. I hoped and prayed it would be temporary, and luckily it is! The surgery went well and afterwards the doctor came in to talk to me and said “we went with option #1” and I asked “which was that?” He replied “it’s temporary” and I was elated!
The next few days in hospital were pretty standard, but as my bowels started to wake up a host of new problems arose. The seal around my bag started leaking. We tried sseveral brands, but they all leaked. Finally they gave me a bag with light convexity and the leaking stopped. Remembering my experience with my first ileostomy, I also stopped using adhesive remover when I changed the bag, and only used barrier film where I was having skin problems (both of these things cause adhesion problems).
I was discharged after a week and readmitted two days later for steriod withdrawal (my taper was too quick) and steroid related dehydration. I also had a minor infectioon at the midline inscision. Then after four more days in hospital I was dischharged and on my way home!
Over the next few weeks and months I will try and chronicle my experience so that maybe other people will be helped by my story. I will also include some product reviews and application tips because bag explosions are no laughing matter! Yuck! I have looked to Youtube and blogs for advice and found that they offered tips and tricks not mentioned by my stoma nurse, so I highly recommend those venues.
Live your best life… don’t waste time reinventing the wheel, learn from other people in your position