Hi there - not to be negative but I had the ileo reversal and I couldn't deal with it after a year. From the unexpected frequency, butt pain after pooping so much, driving and shitting myself (wore diapers all the time), did I mention pooping burn butt pain after pooping so much, and just the fact I seemed chained to the toilet? I decided to get a colostomy bag and I got to be honest my life is so much easier now and I can do anything without concern of having to be tied to the toilet. My colostomy bag can be reversed as I still have everything intact. I don't think I will though unless they figure out rectal transplants LOL....or some kind of makeup for a rectum. I had my rectum removed as well.
I couldn't live with going to the bathroom 6-7 times a day, or go and make a big old POOP and then go 3-6 times after that runny poop that causes your ass to burn so bad. Fuck that...I got the bag cause its easier and the bag is super easy to deal with. Of course its a nuisance though, but whatever.
To all those that did Ileo reversal and stuck with the issues I mentioned above more power to you, I feel for you and whatever decision is made be it get a colostomy or stay without a rectum, all is accepted. No decision is wrong. You got to do what you want to do for yourself. I wear a little bigger button up shirts so my bag doesn't show through, which has worked. I tried the stealth belt but it kind of sucks, because it is to tight on the bag and doesn't give it much breathing room, so if you have to go bad poop can burst through the sides.
Anyway that's my take on the situation, I couldn't handle the unpredictable pooping, I am too busy to be locked down on the toilet, I am fine taking a shit while I am talking to a client he doesn't have a clue LOL....
PS I had progress like you guys, but it will never be the same again. Your going to have accidents, unpredictable pooping at the worse times...butt it can be workable, just not for me.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.