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Cancer: Colon Message Board

Cancer: Colon Board Index

Hi Christy! i've told you my history before (28, LAR on November 5th, j-pouch, no bag). I'll give you my experience in regard to your questions so far.

1) My insision leaked about a week after I got home-- I had fatty necrosis. So I had to get my wound reopened and packed with gauze daily until it closed and it was kind of gross until about march (from november). But now my scar doesn't bother me at all- I asked and they said I was able to put anything I wanted on it. the doctor suggested vitaman e, I've been using (albiet intermittetly) ScarCare. My scar starts about two inches above my belly-button, curves around it, and then runs straight through to my pubic bone. Then I have two drain-scars to the left. I think the scar care has been working, and if I was diligent about it would probably be rather unnoticable. Parts were very skinny, even before I put anything on it (I like to think that's due to the skill of my surgeon). I had about 40 staples in me when I was in the hospital. I can take baths now-- the only reason I couldn't earlier was because my wound was open. I assume if yours is totally closed you can immerse it in water, but if you're nervous, call your surgeon-- i bet his/her nurse can give you an answer.

2) My appendix wasn't removed. But on a similar note (?) I get pain in my left side before I have a bowel movement, and sometimes can kind of press down on my belly and kind of help move the stool (sorry if that's TMI). The doctor said that was normal.

3) Again, i'm probably a little different because of the fatty necrosis. After about 6 weeks, i got a very strong desire to exercise. However, I still couldn't because I had this big open wound on my belly. I walked a lot (I walk to and from work anyway).
I asked my surgeon's nurse about yoga, and she suggested that I stay away from core-focused exercises for now. That was a few months ago, and I started, but I'm modifying the stretches so they're easier, and avoiding ones that don't feel like they'd be good for my insision. I'm also doing a simple weight routine I found on the internet with 2 3lb weights. I didn't start any of this until I was feeling considerably stronger though, and my doctor said it would be okay.
Again, I stress, check with your doctor. For awhile after my surgery, my stomach hurt a lot-- things like sitting up were really hard. You'll kind of know when the muscle layer is healed-- it's something you can really feel.

4) The soreness will go away as your muscle layer heals... your body has been through a major trama-- it's going to hurt for awhile! Be nice to yourself! Things will get easier with time. I still can't entirely lay on my stomach without it hurting a bit-- I want to get a massage, but I fear that laying flat won't be comfortable for me right now. I was more comfortable laying on my left that my right too, but for a long time after surgery, I had to sleep on my back (I hate sleeping on my back!). It was better if I put a pillow between my legs when I tried to sleep on my side. It will get better in time. And if it doesn't feel better in... about 5 months from your surgery.... again, talk to your doctor.

5) When I left the hospital I was put on a low-fat/low fiber diet with a stool softener. This was because my j-pouch was healing, and they didn't want to put any undue stress on it and rip my "new rectum". After a while... maybe a month or so... my doctor put me on a low-fat/high fiber diet, with a fiber supplement every day to "bulk" my stool, and gently stretch my j-pouch, which would let me achieve more "normal" bowel movements faster.

I'm good at the high-fiber part, but I'm kind of bad at the low-fat part, which is bad because when I eat fatty foods, I have very loose, uncomfortable bowel movements. My body is good at telling me what it likes and doesn't like... which unfortionately means i don't get to have fried foods anymore (well, unless I take a bunch of immodium or a lorzapem (sp) first). I pretty much eat what I want and then see what my body will do with it. Trial and error has been my method.

I've been craving chocolate a lot lately, which I don't usually... but I figure that's just a side effect of not being able to eat much of anything at the end of my chemo/radiation...

6) I got my port out in february, but while I went through chemo (and my surgery! I got to use my port instead of having the iv in my wrist) my port was fabulous-- it scared me to death, and is deciedly wierd feeling, but ended up being the best thing ever (though i'm very glad to have it out of my body!) i had it done as an outpatient procedure. I went to a cancer center (mskcc in nyc), so I don't know about random surgeons implanting them. But it was a pretty painless procedure. I had a pump for (for the life of me I can't remeber. I think it was slightly over 30 days)- I went to an outpatient center every week to have it refilled, my port flushed and get my clinical trial drug. (when it's not being used your port needs to be flushed every... 7 or 8 weeks or so. it was longer than i thought).

My chemo was 5FU and I had it in conjunction with radiation therapy, pre-surgery. I tolerated it really well for the first 3 weeks or so, and towards the end I got really sick- I couldn't eat anything, and puked all the time and had horrible fatigue. It took a lot of experimenting with different nasuea drugs before we found one that worked for me. I think a large part of my sickness towards the end could be attributed to my radiation though. However, somepeople react really badly to the chemo-- I know [b]gocatsgo[/b] didn't tolerate hers well, and we were going through very similar treatments.

I took public transportation to chemo, but I often made people come with me, as it gets kind of boring. I found it to be a lot of waiting. They couldn't mix my chemo drugs until my blood test results came back and they were sure everything was okay. My potassium was low towards the end, so I would reccommend stocking up on energy drinks to keep your electrolites up. and bananas.

My post-op chemo was pill form- xeloda, and I tolerated it really well! I just finished my final cycle of chemo on Monday!!!

Good luck with this, and let us know how you're doing. it helps to talk about it to people who have an idea of what you're going through. And ask all the questions you can.

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