life after chemo, radiation, and surgery

Welcome to trying to find a "new normal"
Yup. I had surgery first, then radiation. During surgery they removed my entire rectum and I'm guessing part of my colon - but not all of it. Then had chemo/radiation after surgery. I had an ileostomy for almost a year - I had the take down surgery in November 2008. So I'm about a month ahead of your husband in recovery. That "phantom" urge to go as I call it will drive you nuts. I am finding that it gets better though - just takes time. I don't have the "urge" as much when I'm up and about as I used to, but I do still have it after I've had a bowel movement and I'm still sitting on the toilet (sorry to be so graphic). It seems like there's still more than needs to come out and I need to push - but it just won't come. I'm learning to just clean myself up and walk away. If there IS more to come, just by cleaning up and/or getting up it seems to get things moving again - but most of the time, there's nothing there and I can get up and go on about my business.

The better my eating habits the better my colon seems to work, but even when I'm eating really well, it's no guarantee things will go smoothly through my system. I still have some good days, some bad days.

Have you ever known anyone who lost a hand/arm/etc.? Sometimes they still get "pain" in the lost limb - even though it's not there. I wonder if this "phantom urge to go" is similar - our rectums are gone or surgically altered in one way or another. Maybe that part of our body is sending screwed up signals to our brain. Just a wild guess. It is very frustrating though, I sympathize completely with what he's going through.

cb330farm said:

Thanks
Thanks for answering. I entered the date wrong, my husband's re-connection date was Dec 2007. So he has been together longer than you and it sounds like you are doing better than he. I still feel that food intake is big part. He likes to skip a meal or not eat at all.
When we are to go out w/family or friends. We usually don't go or he stays home. He just gets too nervous and then his belly gets wild on him, then he gets the urge.

May I ask, do you take any special supplements or certain foods that work for you?

I try to tell him to eat small amounts but more frequent (every 3-4 hours). Is that what you do?

I don't like to pry into someone's eating habits, but any ideas would be greatly appreciated.

I hope I don't scare anyone that reads this, I know your life will never be the same, but you
have to know you are still here on earth with your loved ones and you can still enjoy life.

Thanks again and I wish you good luck and a cancer-free life.

hello
i had surgery on dec30 with a temp iliostomy for 5 weeks was put back together on feb5 i still have problems just like your husband.i even wear a pad when i go to bed or go out some where.i dont know how to deal with this new normal.i have tried fibercom benifiber bananas nothing seems to work.i get to where i dont want to eat because of the abdominal pain and gas.hope your husband can make thru his new normal Godbless.....johnnybegood

I had my bag for 10 months, it was reversed in Dec 07. This seems to be the new norm after this surgery. It takes a long time to gain control. I take lomotil and usually won't have to go for at least 6 hours. I wear pads at all times just in case an oops happens. I just got back from Branson and had one day I had alot of pain. It felt like I had to burp but couldn't. Finally after vomiting, things started moving. I've thought about having the ileostomy bag put back on because of all the pain I've had. My surgeon said that he could remove the damaged area from radiation and put another temporary bag on. If I have surgery again it will be to put the bag back permanently. I won't go thru the pain a second time.