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    Old 04-22-2006, 11:35 AM   #1
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    Question Questions-post op exercise, diet, soreness, chemo, etc.

    Hello All,
    Just to refresh, I am 29, post op total collectomy-no bag-and appendix remove almost 3 weeks now. I had to go back to the hospital 8 days after discharge because I had a small bowel obstruction near the anamatosis. I had well to moderately differientated adenocarcinoma in the cecum, 3 cm sessile polyp-opted for the total collectomy because of family hx. No lymph node involvement, but it extended through the entire colon wall, so it's Stage II.

    My questions for all of you that have went through a surgery-my incision is around the top of my belly button down to about two inches into my pubic area-I don't have any incisional pain, just an occassion itch-does anyone else have incisional pain? Is there anything you can put on it to help with the healing or deminish the scar? How long after surgery did you wait to take a bath?

    For those of you that had your appendix removed as well-do you have any right sided tenderness or feeling of fullness on that side? I have a constant cramp-like pain on the right side with a full feeling-my abd swelling varies due to my food intake and output but sometimes it's more prominient on the right side-it feels similar to an ovarian cyst. My surgeon doesn't seem to care about this pain-so I've contacted my local oncologist and famly doc to see if they will give me any answers or at least order a sono, when I sit down it feels worse.

    Exercise-I am restricted from driving for 6 additional weeks from the 16th of April and no heavy lifting of course. I don't life anything really over two pounds without fear of pulling a muscle or ending up in pain. What type of exercise have you guys done?

    Soreness-I can't lay on my right side, I can partially lay on my left, but most of the time I am on my back-and then my back gets sore. If I lay on my sides or try to it feels like unwanted pressure and like my guts are shifting literally-and the radiologist that did my gastrograffin enema stated that your bowels do shift when you move. My upper abd is still tender, but my most tenderness is above my pubic area horizontially. I don't bend over or climb stairs at a high rate of speed, sitting for more than 2 hours hurts if it is in a regular chair.

    Diet-Ironically before surgery I never ate junk food, now I want it all the time. I have been trying to eat what I can tolerate right now before worrying about the dietary benefits of it, which I know might be wrong. I am slowly introducing some foods back into my diet-what did you do?

    Chemo-I am supposed to start chemo in a few weeks, I have to have a port put in they're going to do it under fluro-they say surgeons often mess up ports, so it's better for the radiologist to do them. I will be going to the Lombardi Cancer Center in Georgetown to have my chemo there-for six months, 12 cycles every two weeks, I will have four hours there, then take a pump home for 46 hours, and hopefully my insurance will approve a home health nurse to come and disconnect the pump at home for me. I am going to take part in a clincial trial for Stage II patients, I will be randomly selected, but most likely will have four drugs-5FU, Leucovorin and Oxaliplatin definitely then possibly Avastin-which is approved for Stage III, but this trial is to see if it will benefit Stage II patients based on their tumor marker findings. The benefit of me doing this clinical trial is that they will test my tumor for tumor markers to see if it high or low risk, which will help me know whether or not I am at a greater chance for reoccurance. If I had chemo here locally, they would only give me 2 types, the 5FU and Leucovorin. I am scared of what to expect with the three main chemos-they've given me a list of side effects, but I want to know how it affects you. They seem to think I should be able to work through this whole ordeal and will not lose my hair-my hair is the least of my worries. Do you guys drive to your treatments? I always took my mom and I remember her getting really ill from chemo all the time. I can stop at any time during this trial for chemo and will if I get overly sick and can't tolerate it. I feel since it did go through the last colon wall that there could be some cancer cells out there floating around that are undected and I would hate to find out a year from now it's in my liver or something and I could have done something about it.

    Okay, that's all for now folks, gotta get up before I get stiff. Thanks so much for reading my novel and TIA for your inputs.

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    Old 04-22-2006, 12:35 PM   #2
    larbo's wife
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    Re: Questions-post op exercise, diet, soreness, chemo, etc.

    Hi Christy, If your insurance doesn't pay for a home care nurse to disconnect your pump (or even if it does) you can have them teach your partner to do it for you. It is not very hard to do at all. Our cancer center send us home with everything we need( Gloves, syringes filled with saline and heparin solutions, alcohol swabs, gauze pad and a bandage) They also provide a ziplock hazzardess chemo bag to put the used needle and empty chemo bag and tubing into. We just drop it off at the center when we return the pump and they dispose of it for us. The syringes we use don't have needles. We close the clamp on the tubing and unscrew the connection to the empty Chemo bag. We uncrew the cap off the filled saline syring and gently push the plunger to make sure there is no air in the syringe. (again they teach you how to do this) Then you screw it onto your tubing, unclamp and inject the saline into your line. If your port reguires heparine you just repeat the process. Then close the clamp, place fingers on one hand to hold port in place while removing needle with other the hand. The needles our center uses even collasp when taken out so there is no danger of sticking anyone after removal. If there is any bleeding from port it can be swabed with alcohol swipe and use bandaid to hold steril gauze pad in place. I rarely find any bleeding when I remove Larry's needle however and just use the alcohol swipe. I am sure that I made this sound much more complicated than it really is
    I am hoping all the best for you, Kathy

    Old 04-22-2006, 02:42 PM   #3
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    Re: Questions-post op exercise, diet, soreness, chemo, etc.

    Hi Christy

    I had a right hemicolectomy with appendix and gall bladder removal. I too had post surgical right sided pain, which my surgeon reassured me would go away and after a year or so it actually did. However, to this day if I eat an overly fatty meal, I will get some right sided pain which is probably due to lack of a gall bladder for bile storage. I had an ERCP to check for stones in the biliary duct - (who would think you could still get gallstones after the gallbladder is removed) but it was clear.

    It's possible the swelling could be an accumulation of serous drainage fluid that didn't get a chance to exit before the incision healed. This could be determined by a sonogram and if there is residual fluid it could be removed with a needle/syringe, or in time be resorbed by the body. As far as bathing, consult your surgeon.

    I have heard that putting aloe - the gel directly from an aloe leaf (not a skin cream with some aloe) helps with wound healing, itching,and minimizing scarring. Also, I noticed that on my incision from pubis to and inch or so under my bra line, the areas that were kept compressed by tight clothing resulted in a narrow smooth line, whereas on my midriff the scar is wider, pinker and slightly raised. How you heal is also affected by your skin type. I was a roadmap of stretch marks after my pregnancies, whereas my mother who had three children, had a smooth unmarked stomach afterwards.

    You will most likely notice more discomfort when the weather is bad and just before rainy damp weather. (think of it as your own very personal weatherman)

    Others on this board can help you with side effects of chemo. I had only 5FU and Leucovorin, resulting in some hair thinning, mild nausea which went away after eating something, some tiredness, no mouth sores.

    It is important you keep up your protein intake during this post-op time. An operation is an insult to the body and your metabolic needs increase to 1.3 or 1.4 times normal for at least two months. Protein is needed to help rebuild injured tissue and aids healing.


    Old 04-23-2006, 08:05 PM   #4
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    Re: Questions-post op exercise, diet, soreness, chemo, etc.

    Christy, you are asking so many good questions. Just a quick background. I was diagnosed July, 04 during bladder surgery, so this was all sort of a surprise. I finshed chemo last may, and had 5FU, lecovoran, and oxalpalatin. No one can tell you ahead how you will react. Then my wife and I met with the oncologist, he told us all 3 could get the same drugs, and we could all react differently. I never missed a day of work due to chemo, but I also know people who weren't able to work during most of their treatment. My surgeon said that I could exercise 3 weeks after surgery, but not to do abs. I generally was able to exercise during chemo (even doing aerobics, but not as strenuosly), but also listened to my body. You learn not to push it. My oncologist said to bring someone to drive for the first treatment-it is overwhelming and your mind is going in all kinds of directions. That first chemo is terrifying-it does get better. I was able to drive to my other appointments, and would many times stop for food or coffee when done. Not to be discouraging, but I also took the 12 treatments, every 2 weeks to mean 6 months, and it may. However they test your blood and if everything is not right, they will postpone treatment to let your blood recover. Protein is good for healing, but also listen to what your body is telling you. During this time, the doctors are more concerned with you eating rather than what you are eating (at least up to a point). If I can get back to exercise a minute, it sounds like it is something you do on a regular basis. I found that exercise was one of the few constants or normal things I could control. So much is out of your hands, that you need something to keep the feel of normalcy. When people offer to help, take them up on it. You learn that it is not a sign of weakness. Your emotions are on edge, it is not a sign of weakness to cry. Also, take a not***** to your appointments and write down what they tell you. What they are saying and what you hear are two different things. Best of luck to you. Don't be afraid to ask us questions. You will find those of us who have been through this are a tremendous source of information .

    Old 04-26-2006, 09:28 PM   #5
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    Re: Questions-post op exercise, diet, soreness, chemo, etc.

    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 gocatsgo 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.

    Last edited by cinda; 04-26-2006 at 09:35 PM.

    Old 04-27-2006, 11:32 AM   #6
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    Re: Questions-post op exercise, diet, soreness, chemo, etc.

    Hey Christy, just to add my two cents, I am 30 years old, just finished Chemo at the beginning of the month 5 FU, leucovorin, and oxaliplatin with the pump the port etc.

    I drove myself to chemo, I did find it made me tired, partially because of my schedule, I travel with my job, so I would go on Monday and Tuesday, and drive Tuesday to where ever I was working. I disconnected my port myself each time (because I was out of town working) it really is no big deal, quite scary the first time, but easy to do, and my oncologist would give me all the flushes etc before I left. I exercised during the first 4 months of my 12 session/6 months of chemo, mostly walking on treadmill, some aerobics classes and some swimming, the last 2 months I didn't do much exercise, probably because of my cut throat schedule of work and travel. My biggest things with chemo was being tired and the lovely side effects of oxaliplatin. Good luck to you.

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