Recal cancer surgery options - quality of life and cure goals

dschreffler said:

I'll be seeing Dr Weisser on
I'll be seeing Dr Weisser on the 27th. I've heard a lot of praise for Dr. Paty, and all the staff at MSK. One of my chemo pals had his surgery done by Paty. He is in similar situation as I am, just a bit older and looking forward to reversal.

Good luck with your scans!

Hi DS!
Welcome to our lovely family! You sure do have a hard decision to make, and definitely one that may not be good for some people who wouldn't be able to handle a colonostomy mentally. I had a colonostomy done not by choice, it's great you have that choice, but you must look down the road as well, where what if something happens and you need it done anyway? how does one actually prepare themselves for one? I didn't have time to think of it, as mine was done when I admitted myself into the ER room, and my colon was perforated, my bowels were literally leaking into my belly, and this was a procedure that really saved my life. I could have died that night, had I not gone to the hospital. It was a 5 or 6 hour procedure, where they even used 11 liters of sea salt water to wash me out with.

I had about 20 minutes to think what was going to happen to me, when the surgeon came to me to tell me what needed to be done, and how it would be done, it's a temporary colonostomy, but to me, it will permanent, because there is no way I'm going through a reversal, I'm too scared also. I actually had alot alot of pain killers going through my IV, so I was a lil loopy, but I just told him, I had 4 children, and not ready to go, and to do what they had to do to keep me alive. And they said they wouldn't let me go anywhere, and that's when we rolled into surgery.

I woke up and was in ICU for a couple days, the Chief Surgeon who was there that night was the one who performed my operation, and he even spent time with my hubby talking about what he did, and how he was even able to get the thick mass in my colon out, and that I did really well, he was very positive, and I thank him for even calming my hubby, who was up and didn't go home for 2 days, till I woke up and was lucid enough to speak, but I have no regrets about it.

Sure it's not the prettiest thing to look at, but who else is going to know I have one unless my shirt too tight and I what looks like a big balloon there lol...and also I was always afraid of what if it busts in public? well, I just carry a bag anyway of supplies with me if it does bust anywhere, I am prepared, if someone saw me or saw it leaking, well, I guess I don't care enough if they're going to stand there and gossip, since I'm not into that sort of scene, I'd rather help the person with their problem, then look at them. I only care about people who actually care about me really, and that's including the lovely folks here.

Sex??? haha! I tell ya, it's painful for me, and I don't know why, but I feel like a virgin all over again when I have sex, like the hymen grew back over, and it stings then bleeds again, my hubby doesn't mind much, he's such a loving person, he's just so happy I'm still here. there could be worse then worrying about me pooping a different way from others, and actually, I find it more convenient! no more hemorrhoids, no more trying to stop and finding a bathroom when I have diarhea and holding it in, no more constipation, there are some pluses to go with the negatives. I wear oversized shirts to hide the bag, my bikini days are long over, I don't swim anymore, but that's my personal choice, there are people who do, I just am afraid of losing the bag in the water, and things getting abit unsanitary. But, I just wanted to let you know, it's ok to have a bag! I can think of worse things, and people going through worse things. I'm not disabled, it may limit me alittle, but not too much, and during sex, I wear a shirt or put a towel over me. I'm just pleased my hubby still wants me after all this crap I put him through. You seem like a strong man, and I think even a bag wouldn't stop you from doing what you want. It takes time to adjust, but they will show you in the hospital how to change it and after awhile, it'll become a "part" of you I've named mine Nagging Nelly, because the noises she makes sometimes reminds me of my mom nagging at me, a warning, when you fart, the stoma may make some noises in public, which my hubby have come to terms with if it's in public, I just point to him and say "He did it" LOL!....Life is short, you don't want years of recovering, you want to live in the now...for me personally, it really isn't that bad, in fact, it puts a little humor back in my life

Hugsss!
~Donna