Colostomy scheduled in a few wks

This will be my 10th surgery after a blotched bowel resection two and a half years ago. I had a temporary ileostomy a couple of years ago after developing a fistula from the initial surgery. I've since gotten help through surgeons at the Cleveland Clinic. My rectum and sphincter muscle are non-functional. I am sick so often and have such difficulty both passing and controlling bowel functions. They performed a defecography test a year ago and it showed that I could only expel 10% of the barium...the average is 80-85%. 50% is bad, 10% Everything has just gotten worse, so the surgeon agreed this was my only option. I do trust her and have gotten a second opinion anyway. That doctor agreed that I had two options, either a total bowel reconstruction (which Cleveland felt would fail) or the colostomy.

I'm just really scared. I had a terrible time with the ileostomy. I was sick all of the time, wound up with gastritis and had such skin irritation from either the appliances or the leaking under the wafer. Can someone please share what to expect? How do you control accidents? How long it takes to recover? Am I making the right decision. I can't even begin how to explain how terrified I feel.

Thank you so much for any advice or support you can lend.

Tina

Post Edited (Tinamarie) : 2/27/2011 2:07:09 PM (GMT-7)

with a colostomy leaks are rare or maybe even impossible, unless you caught a virus and have diarreah. but surely it should be much easier for you with the colostomy than with the ileostomy. i have a similar problem, i have anismus and can't expel anything from my rectum and it consumed my life for so many yrs. i now have an ileostomy and feel the best i've felt in yrs. no matter how much money they offer me, i would never ever go back to the way things were. i wish you the best of luck and hope this is your last surgery.

you're most welcome Tina! WOW you had a great deal of comlications just from the STARR.... my STARR procedure wasn't involved with any complications at all, but i think it did cause me anismus :(

i don't know what was the reason for your skin infections in the past, but i hope that with getting the right appliance that works for you should be ok. maybe you were allergic to the wafers? which one was it, hollister, coloplast or other? i think this time you should have your stoma nurse work with you to find the one that is right for you.

to your question about my needing an ostomy, my story is that i had colonic inertia for 16 yrs (age 20-36). i was struggling with it really bad and nothing helped to improve my quality of life. my first defecography on Dec 2005 showed severe intussusception and a small rectocele. the surgeon suggested the STARR procedure, but they missed diagnosing the colonic inertia, so the STARR wasn't enough to help with my constiopation. so i had more tests and they showed colonic inertia and on Aug 2009 i had my colon removed. they removed my whole colon and attached the small intestine to the rectum. well that was ok for about 2-3 mons, then i was getting constipated again and no bms w/o laxatives. the reason was that i have severe anismus - nonrelaxing puborectalis, so i can't expel anything from my rectum and i also have inertia of my small bowel as well. my drs said i should try a loop ileostomy. once i put my mind to it, i decided that if i go for an ostomy, it should be a perm one, not a loop, but my surgeon didn't want to do an end right at first, cuz he wanted to give me the opption of closing it in case i couldn't handle it.

so on July 2010 i had my loop ileostomy done. i'm much happier now with my ileostomy, but i just wish they had removed my rectum and made me an end ileostomy, cause my rectum does produce a lot of mucous and i can't expel it and it's only giving me grief. that is so good that your surgeon suggested removing the rectum in case it produces mucous and you can't manage it. i wish mine had suggested it too.

hope everything goes extremely well for you, best of luck!!