Hello all! I've been off the boards for awhile, but I do make it a point to pop in every January to give an update.
This post is specifically meant for anyone contemplating the surgeries and who may be alarmed at the mentioned possible complications, etc. I certainly was when I was trying to decide what to do and I think I lived with my UC longer than I had to because of that. What you need to keep in mind is, for every negative post about the surgery in here, there may well be numerous people NOT on the boards because their surgery was successful and they are out and about, living their lives UC-free and really not thinking to even come here.
I had UC for more than four years, I tried pretty much everything and could not stay in remission. I was pretty much housebound. I worked only because I am a mobile dog groomer and I rigged a portapotty in my grooming van. I could not even go food shopping -- if I was at the front of the store and felt that urge, I'd never make all the way to the back of the store and the bathrooms without soiling myself. It was bad. I was steroid-dependent for two years. Remicade helped, for a time. But I did not want to be on it for the rest of my live with the possible risks that that may entail down the road, cancer wise. My GI asked me point-blank what I was putting off the surgery for, and when I told him he said what I said above -- there are a lot of people who did great. They aren't on the support boards. He told me to at least consult with a surgeon.
The most important thing is to select a surgeon with as much experience as possible. My guy has been doing these surgeries for decades. I had my surgery Jan 10, 2010. I woke up to news of the Haiti earthquake and in my morphine-drip haze I used my cell phone to donate four times -- each time thinking it was the first ;-) Oh well, good cause.
I won't sugar-coat it. The surgery and recovery, even without any complications as I had, is rough. You will feel like crap for weeks. Just take it slow, move around as much as you can -- and then some more. The more you move, the faster you will feel better.
I had no appetite at all, which my visiting nurse said was slowing my healing. I needed to eat protein. What helped there was my husband started to just fix me little nibbles without asking and just bring it and tell me to eat a few bites. When asked, I turned down food, when he went to the trouble to fix it and just give it to me, I'd manage to eat a bit.
I had a really hard time dealing with the colostemy bag. I was never able to successfully change it on my own, but my husband was a freaking saint and together we were able to manage it. I was plagued with leaks and the skin around my stoma was red and irritated for about three months after my take down surgery.
But I did get through it and today you wouldn't even know I had ever been so sick. After my take down surgery (THAT surgery was a piece of cake, quick recovery and with the bag gone my mood improved considerably. As soon as I got the go-ahead from my surgeon I went to the gym and got a personal trainer to help me rebuild my abdominal muscles safely.
A couple of years ago I started stand up paddle boarding and it's a passion with me now. I am out on the rivers for hours and hours and never have to worry about needing to use a bathroom. I am quite grateful for my health and never take it for granted. I work out at the gym five to six days a week and revel in getting my strength back. I'm 51 years old and in fantastic shape.
As far as eating, pooping and all that fun stuff -- 100% normal. I've never had a blockage, I eat everything but most veggies just visit -- I see them pretty much come out as they went in. Chewing extremely thoroughly helps a bit though. Until recently I had to stay away from carbonated drinks as they caused me discomfort, lately I find I can have a small diet soda without too much trouble. For the first couple of years I needed to keep Calmoseptine handy but for the most part my poos, while soft, aren't an irritating liquid anymore. Although if the quality of my diet is poor I get extremely liquid again. Even when very liquid I don't leak or have accidents and can hold things as long as necessary. On the whole I do avoid processed and greasy foods. It's actually kind of nice to have the more or less instant feedback on the quality of my diet. I think my health as a whole is improved for it.
I know a lot of you here, or at least in my day it was like this, are concerned about numbers of poops per day -- I don't count. I'm sure if I did it would be more than a person with full plumbing. But the important thing is it in no way affects the quality of my life. I'm not constantly in need of a bathroom. I don't think I need to visit a bathroom more often than I would to pee anyway.
One negative thing (which my hubby thinks is HILARIOUS) is my bathroom visits tend to be noisy and somewhat explosive. I'm a little weary of constantly having to clean up the toilet after myself, and it's somewhat embarrassing to use public facilities, but it is what it is. I'd rather this than what I was dealing with pre-surgery.
So that's it. I am doing AWESOME and my only regret is not having gone through with the surgery much much earlier. Best thing I have ever done.
Michele
Original Post
