Postby Rikimaroo » Wed Apr 28, 2021 1:35 pm
I am going to chime in and mine will be on the other spectrum of everyone else who posted here. Like you I had RC and 9cm from anal verge. I had LAR and had ileo for about 6 months and reversed. Once you lose your rectum the challenge is holding your poop and if you have to go, you don't have that muscle anymore to hold your poop. So you going to be force or have accidents no matter what. After my reversal that first month was terrible, the first day 40 times, but during that month it gradually decreased to 25 times and less.
I will be straightforward with you, its not easy. Yes it can get better for some, but for me it didn't. I had issues where I felt chained to the toilet. Some days, were amazing I went once for the whole day, other days I had burnt ass from going too many times. Too many times meaning 6-8 times, first you get the normal blow out poop which is nice and sometimes you don't have to go again, but the problem is when you have to go 5 times after that, your ass will be on fire and it hurts.
After a year of dealing with it, pooping myself in the car, wearing diapers all the time, can't spend time with my family because I feel that I will have to go and spend 1 hour in the toilet or going back and forth and have pain if I go to much I got a permanent colostomy and it has changed my life to the better. I own an IT business and one time I met with a client to pitch my deal and I had to go to the bathroom while we were talking. I went and spent 30 minutes on his toilet. Then I came back started talking to him and had to stop 5 minutes and go back to the bathroom. This was maybe 3 times running back and forth, it was embarrassing, interrupting, and honestly I had to tell the client my personal business of why this was happening. He never signed, but not because of that I Think LOL...
Everyone is different and everyone will tell you something different. I read all the posts here, and honestly I don't want to go to the bathroom 5-6 times a day and clustering SUCKS. Clustering basically means you don't clean out and you have to take multiple trips several times. I tried Metamucil/Imodium but that have there own problems. Imodium can cause constipation which is another pain in the ass, and Metamucil can make you clean out better, but sometimes you still have clustering and residual shitting, which hurts when you go to many times. Personally I hate having a bag, I don't want it, but it gave me my life back and its easy to snap off and put another one. It bulges a little out of my shirt, but you can barely see it. If you fatter might be harder to hide, if your thinner probably won't show as much through your clothes. Honestly I don't give a F if someone sees or knows I have an ostomy. I got no one to impress.
So if you lose your rectum, it won't be easy and you won't be normal ever again. Like the others here who posted, they adapted as much as they can, but I guarantee you none of us is happy with our situation but we take what we get and live with it, some don't want a bag just because.
I know its a hard choice, get the reversal and see for yourself what you think. Everyone is different but I know 3 people that got the reversal and even though things are better they still poop 3-5 times a day, or sometimes, SOMETIMES if your lucky its one big blowout and your good, but that doesn't happen all the time. I think a lot of people play down the pooping and burning and complications, because there just adapting to it, but its not easy. AS a trial lawyer you don't have the convenience to tell the judge several times you have to run out to the bathroom.
Its a tough choice again, I hope my story helps you make a decision. Some people just don't want the bag again, because of psychology, feeling less attractive (I definitely do, but my wife loves me unconditionally).
Good luck on your decision and I am more then happy to discuss anything you like. My surgeon is one of the top surgeon in the US Dr. Steven Wexner of Cleveland Clinic. So for me to have decided to switch back to a bag after him doing a surgery tells you that its just the life without a rectum is not as easy. Here is the definition of the rectum:
The rectum is a straight, 8-inch chamber that connects the colon to the anus. The rectum's job is to receive stool from the colon, let you know that there is stool to be evacuated (pooped out) and to hold the stool until evacuation happens. The sigmoid and traverse and other parts of the colon doesn't have this capability. It can't hold your stool, you can squeeze your butthole as hard as you can but I promise you that its going to come out no matter what and at the most inconvenient time in your diaper and nobody wants to feel shit up there ass and on diaper, its super uncomfortable, trust me its happen to me multiple times. Why do you think animals hate being in there poo, we humans hate it too (LOL). Couple times I had to pull over in the side of the road to poo, it was dark thank god, but still after all this shit, hostage feeling to the toilet, hard to spend time with my family, burn butt from going multiple times I decided to get a colostomy. If you do all those things with your kids, its going to be hard without a rectum.
Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
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.