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Survivor Questions

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

Hi! I am a 57 year old female. I was diagnosed in April 2011 with stage 3 colon cancer. I had surgery removing 1/2 of my colon and 12 rounds of chemo the last being November 12th. After my surgery I did very well with my bowel movements. Very loose stools and I was going many more times a day. As time went on becoming more like my post surgery self regular and more formed. As time has gone on, I am struggling with constipation and stools that are very hard. Has this been anyone else's experience? I am also so tired! If I am home I am napping every afternoon . I have neuropathy. It has gone away in my fingers, but my toes up to the balls of my feet are still numb and tingly. And I suffer with joint pain that I never had before chemo. It hits in all different joints at different times.i will go days with no pain and then I will have it in one or multiple joints. If anyone has any answers with how they deal with their constipation I'd appreciate any ideas. I bought some stool softeners but it says not to take them for more than a week. I wish each of you wellness and healing. God bless!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

it might sound to simple, but lots of water and no dehydrating liquids like tea, coffee, alcohol.

plenty of fibre will help.

i favour natural remedies where possible. good luck, try the water.

now water aint water, so consider reverse osmosis alkaline if you are into anti cancer wellness sorts of things.

i hope your bowel habits improve, mine have been good recently.

hugs,
Pete

LivinginNH's picture
LivinginNH
Posts: 1258
Joined: Apr 2010

Umm, you need to be very careful when it comes to eating fiber - having lots of fiber in your isn't all it's cracked up to be.... Rick is now on a very LOW fiber diet after he ended up with two colon blockages. We thought fiber would be good to prevent the blockages, but it was just the opposite, it blocked him up terribly. Each patient is quite different, always ask your doctor before starting anything new, or you could be quite sorry that you did.

Cynthia

thxmiker's picture
thxmiker
Posts: 1198
Joined: Oct 2010

One can have fiber, more important is Low Residue Diet in the beginning.

Best Always, mike

LivinginNH's picture
LivinginNH
Posts: 1258
Joined: Apr 2010

duplicate

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

I definitely need to drink more water. I need to start keeping track and making myself do it! I am just not a thirsty girl so I don't drink much that might be part of the problem. Thanks Pete!

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

I definitely need to drink more water. I need to start keeping track and making myself do it! I am just not a thirsty girl so I don't drink much that might be part of the problem. Thanks Pete!

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Totally agree with Cynthia.. carefull on the fiber...
your story timeline sounds familiar.. did you have a resection with a colostomy by chance .. if so fiber is not too good an idea..
I still have the neuopathy.. doc says can last 1 - 1 1/2 years after final treatment or forever.. I have come to believe mine may be forever.. not truely painfull as much as disturbingly wierd in both hands and feet.
Once chemo ended I did seem to be more constipated thou I found on Folfox i was constipated and dr said it should have been the opposite ... funny thing for me was chinese food made me go easier and my proctologist suggested Milk of Magnesia over stool softeners... I am back on chemo now for mets. folfiri and just the opposite is occurring nothing I try tightens up my bowels.
If I get constipated at all now.. I find cantelope or pineapple will make me go too.. you might want to try them.. are you eating diary.. diary may help.. not cheese. but milk, icecream, yogurt..
Good Luck and Good Health.
Donna

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

Donna, I did have a resection, but no colostomy. I am eating a lot of yogurt, and cottage cheese, and a cheese stick for a snack. I like melon and pineapple. I haven't noticed it helping however. It's funny how everyone is different. OHHHH I love Chinese! Thank you for your suggestions!
Wishing you health and wellness!
Beth

herdizziness's picture
herdizziness
Posts: 3387
Joined: Apr 2010

Are you taking any pain pills? This is a good source for hardened stools and constipation. I will drink coffee with milk when that happens, and within hours seems to let things "loose". (just a cup or two does the trick for me).
Winter Marie

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

No pain pills, just Tylenol and Ibuprofin for the joint pain. I love coffee. About two cups a day, but not helping either. Thanks for the suggestion though!
Wishing you well!
Beth

Annabelle41415's picture
Annabelle41415
Posts: 4187
Joined: Feb 2009

It can be a struggle to get your system to cooperate. Trying prune juice or eating prunes, also metamucile can help get things moving. Drinking water or tea can help things move too. Good luck, I've been there and can understand your situation.

Kim

steved
Posts: 836
Joined: Apr 2004

As you see above we are all very different after these ops. Stragngely I became quite lactose intolerant so lots of dairy affects me badly (just reminded me as you described all you yoghurt and cheese) and fo me fibre is necessary but in moderation. High fat foods eg anything deep fried, also upset me. Try introducing/ eliminating single foods to see the effects but it takes a long time to really find what suits you. Overall, once you find it sticking to a fairly regular routine helps then using meds to help you tolerate when you want something you know will affect you badly means you can still treat yourself- if I want to have several beers and a curry I know I will need some loperamide after/ if I go to Italy and live on pasta and pizza for a week I need a bit of laxative.

Find your own way but be patient. It took me 5 years postop to get completely off refular loperamide and I still carry one or two with me 'just i case',

steve

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

What is loperamide?

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

What is loperamide?

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

What is loperamide?

steved
Posts: 836
Joined: Apr 2004

It is a drug that slows down the bowels and is available over the counter in various formsit is the generic name as I am inthe UK and the trade names differ her from the US (here it is mainly called imodium).

It is the one to slow things down, laxatives to speed it all up- its a balancing act.

steve

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

Ahhhh Imodium I know.... Thanks

PatchAdams
Posts: 272
Joined: Nov 2011

Very common to have chemo induced arthritis and painful joints come with menopause (which is caused by chemo).

Lisa42 (no longer with us) had horrific arthritis pain after chemo and she was in her early 40's. Ron52 has awful arthritis. I have the roaming joint pain and still have neuropathy from chemo over 3 years ago.

I've been constipated since my resection almost 4 years ago. Raisinets work for me. A couple of handfuls at night while watching t.v. then coffee in the morning are my trick. Triskets (just a couple) are my rescue tool. My Gastro said to use a capful of Miralax daily but I'm not one for meds. My onc said stool softeners. No thanks.

herdizziness's picture
herdizziness
Posts: 3387
Joined: Apr 2010

I had bad arthritis in my hands, pain everyday, but during and after my chemo it went away. One part of chemo I'm extremely thankful for, the pain in the hands is something horrible, it's so nice that it's gone for now, thank you chemo for that one.
Winter Marie

luvinlife2
Posts: 172
Joined: Jul 2012

Welcome!! I've had the same issues with constipation since my surgery in 2008 and have tried so many different things, some that worked for a while but nothing that seemed to get my system back to normal. I am still doing chemo by the way, so it's been an ongoing isssue for me. It's really a hit and miss deal until you find something that your body reacts well to.

A few things to try would be:

Senna Tea (1 cup every evening)

Slippery Elm (lol...things do slip but be warned...does not smell nice at all!! I couldn't stand it and had to cover my nose.)

Green Envy (green juice supplement..has almost every green imaginable in it) Buy it at Costco.

I also had food allergy testing and found out that I was allergic to foods without the usual outward symptoms. When I eliminated those foods from my diet, for the first time in many years my system worked normal. I still use the Green Envy every day as well.

Don't do all of these things at the same time!! LOL

Good luck!! :)

ron50's picture
ron50
Posts: 1260
Joined: Nov 2001

I too was dxed stage 3 c. I am well past the ca ,over 14 years. As far as my plumbing is concerned my GI made the point ,you had irritable bowel before ca ,why would it be any different after ca. Why indeed. So I find that I am either constipated or running off to the loo every five minutes. It has been particularly bad since I doubled my dose of metformin for type two diabetes. I aked my gi how to deal with constipation. She advised me to dissolve half a teaspoon of epsom salts in some hot water and take that. Next question was how do I stop the vomiting. As usual I solved my own problem. I got some gel caps from the chemist. I just fill the gel cap with epsom and no worries. No taste nothing. It is a good safe non habit forming laxative. I have had really bad arthritis since chemo,both psoriatic and spondylitis. It is not fun but the arthritic drugs are as bad as chemo. I have had high dose prednisone , Salasoprosyn (excuse spelling) methotrexate,arava and endep,lyrica and neurontin for neuropathy. The arthritis drugs are not for pain but to stop disease progression and the neuropathy drugs did not work for me. They want me to take humira now but I am not going there. I have serious problems with my kindeys too ,my nephrologist wants me to try humira as well and if not that cyclosporin ,cyclophosphomide or imuran. Not going there either. I have had three kidney biopsies and all that has told them is yes there is a problem with my kidneys but it does not relate to any of the common kidney problems. Three strikes and you are out. I am not a fan of the lets try medicine. I do know that I was given methotrexate for my arthritis and it helped my kidneys till it stopped working. I really miss self injecting methotrexate....not! Life after ca is anyting but boring. Hope your path thru survival is a lot easier,best wishes,Ron.

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

Thank you for your post Ron! I love hearing survivor stories like yours! I too know 2 men who had colon cancer with no reoccurrence. One has been 17 years, and one gentleman is 85 and had his in the 1980's and is still going strong! That's a beautiful fish. What kind, and where was it caught? Enjoy everyday! Beth

ron50's picture
ron50
Posts: 1260
Joined: Nov 2001

My fish is an estuary cod around 30lb taken on a close reef just off the town of Caloundra on the Sunshine coast Queensland Australia. I love my fishing and the outdoors. My arthritis slows me down a little but I still get to fish every now and then. Mainly in the rivers and creeks now ,I'm a little too unbalanced to go offshore on my own. The trip I caught that fish my crew mates were a double lung ca sufferer and a viet vet who had had sextuple bypass and I was half way thru my year of chemo,Ron.

Lovekitties's picture
Lovekitties
Posts: 2878
Joined: Jan 2010

As others have said it is all a balancing act with foods and as individual as each person.

The things which can cause constipation would include white rice, toast and bread, bananas, apples.

Check with your doctor about the directions on the stool softner. Those are for 'normal' folks and there to make sure they don't self medicate and ignore a problem. Also ask your doc about seeing a nutritionist. If you keep a diary about your food intake it may also lead you to know what works and what doesn't for you.

I have also used the old wives 'cure' of a cup of PLAIN hot water. Make the water as hot as you can tolerate and drink it down. As you know, lack of water is one of the causes of constipation.

If you don't like water, try to get in watery foods such as cantalope, watermelon and the like.

Best of luck finding what works for you.

Marie who loves kitties

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

Thank you Marie! I love kitties too!

dorookie's picture
dorookie
Posts: 1681
Joined: Jul 2007

Hi Beth,

I am in remission almost 4 years now, stage 4, I struggle with bowl problems all the time, I know if I dont have a movement for 2 days I am taking stool softeners, just the cheap Walgreen brand, I take 3 of them, 4 if I have gone 3 or more days with out any movement. Its a constant battle, if I take to much then in comes the Imodium, for me its just a matter of getting to know your body all over again, and telling yourself this is your new norm. As for the neuropathy, I have it bad in my feet as well. Some days I just want to cut them both off, other days not so bad, but it is constant for me, constant tingling, or a numbness feeling, have tried a few different meds for it, but as of yet nothing has really worked. It has been bad lately so might be seeing if the DR has anything new come up that might work. THe tiredness, that is another beast in itself, I struggle with that too. I know there are many factors that can contribute to being tired, had a thyroid problem but now have that squared away, not I am thinking it might be my weight, need to loose weight, need to exercise, need to eat better, all of which I know and one day I will achieve my goal of exercising and loosing weight :)

Well just really wanted to say you are not alone...Wish I had some miracle answer to help you. But I will keep you in my prayers..

HUGS
Beth

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

Thanks Beth! I love hearing you have 4 healthy years since your diagnosis! Continued wellness and good health wished for you!

thxmiker's picture
thxmiker
Posts: 1198
Joined: Oct 2010

I wish I could be constipated/ Since colon surgery(ies) I now go 3-5 times a day. I do drink a lot of water. Living in California (Costal Desert, and now the mountains in Arizona, I need to hydrate for the climate.) I do eat a balanced diet (The Zone) and I still poo loose. My wife eats with me and other then Breakfast we eat the same all day long. She gets constipated when she does not drink enough Tea or water. (Green Tea)

Hydration solves a lot of problems like headaches, migraines, constipation, digestive issues, etc...

Best Always, mike
PS I agree with Pete Reverse Osmosis and go down to .5 microns. I use a system from Titan Water Pros because they are the least expensive great system. ($140 or less for the system and $60 for a three years supply of filters! They are out of Phoenix. I needed an $8 part from Home Depot to make it work under my kitchen sink.) That is much less then any other price I could find. It took me 20 min and a couple of swears to install. lol

So Worried
Posts: 111
Joined: Aug 2012

so sorry for the multiples, website was locked up...sorry everyone.

So Worried
Posts: 111
Joined: Aug 2012

I know a couple glasses of apple juice has helped my husband before...you could give it a try. Good luck and hope you find something that helps you. Prayers sent your way...

So Worried
Posts: 111
Joined: Aug 2012

I know a couple glasses of apple juice has helped my husband before...you could give it a try. Good luck and hope you find something that helps you. Prayers sent your way...

So Worried
Posts: 111
Joined: Aug 2012

I know a couple glasses of apple juice has helped my husband before...you could give it a try. Good luck and hope you find something that helps you. Prayers sent your way...

So Worried
Posts: 111
Joined: Aug 2012

so sorry for the multiples, how do you delete a post in here? thank you so much

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

If you START a thread you can delete the thread but posts can not be deleted. They can be edited up until someone responds to your comment. Pressing the Post Comment more than once results in the multiple posts.
Press once, have PATIENCE
:-)
It's like being constipated.
Just take one laxative or a few prunes.
Don't eat a box of prunes or take 50 laxatives, let them "kick in"...

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

Love your humor! Thanks!

plh4gail's picture
plh4gail
Posts: 1232
Joined: Oct 2010

I do have something to add that you might check out. I finished my last chemo 5/11 and waited for a year to get my energy back. I was very tired. I started back to work, a new job even. I was more than tired, I felt depleted, groggy, couldn't think, remember, concentrate, ready for bed at 730 and woke up ready for bed again. I was also very very down. I mean in a very dark place. I told someone I didn't care if I woke up in the morning and meant it. I knew my kids knew they were loved and felt that was enough.

Well, at a friends urging, I had my estrogen and Vitamin D levels check. We colorectal ladies know radiation will put is in menopause. ....But my levels came back post menopausal and my vitamin D was 20 (normal is 30-80, 50 being the happy place for the DR.)My Dr recommended I take Estroven which is sold over the counter and is supposed to be a natural hormone replacement. Also was put on 5000 IU Vitamin D3 daily for 3 months, and to be rechecked at that time.

I will tell you that the difference is amazing! Right away I felt the difference. It's now been 6 weeks. I am alert, and feel great. If I am tired it's because I worked hard and earned it. I can tell the difference at work and everything I do.

Might be something to look into for part of your concerns. I don't have the same issue as your other. Good luck, Gail

John23
Posts: 1832
Joined: Jan 2007

Re:
"I had surgery removing 1/2 of my colon"

You have to intake more liquid, since your colon is not absorbing
what it did when you had a complete amount of colon.

Not "more", as in a quart at one time, but liquid at a rate of
around 4oz per hour. if you take in more water than your body
can absorb in a short amount of time, it will just eject it. But
a smaller amount (4oz per hour) will more easily be absorbed
and released -into- your system.

Not enough hydration will lead to all the side-effects that you are
experiencing. You might also suffer from a b-12 deficiency as well,
from the dehydration! The side effects from a b-12 deficiency includes
all the symptoms you mentioned.

So do not drink "more water"; drink water more frequently.

Best of health!

John

Eltina21's picture
Eltina21
Posts: 174
Joined: May 2010

Gee Beth, you sound like my sister. You asked the questions that I always wanted to ask. That is what I enjoy about this site. No one is ever alone. The neuropathy did leave my fingers and hands as well, but my feet are another story. I am also going to try to drink more water. The responses that you have received contain so much positive information.

Peace and Blessings,
Karen

Sonia32's picture
Sonia32
Posts: 1062
Joined: Mar 2009

of remission (touch wood, my head). I did have a lot of bowel issues up until last year, and some things I could eat in the past I can't do now. But you will learn what is right for you or not, just wish there was a guide book for those who have finished treatment. I tend to have a lot of memory issues, short term, but ahhh. Hugs

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