Posted 11/21/2015 7:26 PM (GMT -6)
Badaboom...first of all...love that name!!! LOL! OK...I have a permanent ileostomy. I was diagnosed with ulcerative proctitis in 1998 at age 52. My disease never traveled further into my colon, but, oh that rectum was a doozy. I did enjoy a few remissions here and there, but starting in 2003, my disease worsened...just in the rectum!!! I tried 6MP, Remicade and then Humira...nothing worked. I became prednisone dependent and it was killing me. The difference in my case was that my GI doctor refused to send me to a surgeon! He just wanted me to keep trying more and more meds. So, I found my colorectal surgeon online. He was head of colorectal surgery at the Univ of Pa. Hospital in Philly. I live in south Jersey. I was not a candidate for j-pouch and he told me that straight up. I think it was because of my overall deteriorating condition and my age of 63...this was in 2010. By that time, I was just so sick of being sick that even the thought of having a bag for the rest of my life was welcoming because I had a poor quality of life.
I had a few blips while still in the hospital, I believe I had a bout of sepsis, but they got that under control ASAP. I had NO clue as to how to manage the "bag". I remember looking down on it after my operation and thinking..."OMG...how the hell am I going to deal with THAT?" However, I had an excellent ostomy nurse. He was a Godsend and, believe it or not, I still call him from time to time because I have had issues with some skin irritations under my wafer. I am now 69 yrs old and for the last five and a half years that I have had my ileo, I have enjoyed life to the fullest. My surgeon left my anus and last year the UC started to attack there, unfortunately. My surgeon retired in 2013 and I am seeing another colorectal surgeon here in Jersey. He did extensive biopsies and there is no dysplasia or cancer and he sees no reason to operate to remove the anus. I am using Cort suppositories and they seem to be working. I also got a second opinion just for good measure and he agrees...no operation to remove anus.
You say you are a cancer survivor? Your case is probably a lot different than mine, but I just want you to know that having a permanent ileo is not bad at all. Sure, it takes getting used to, but just take one day at a time and things will work out for you. God bless and good luck.