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ALLABOUTPOOP

ramona41's picture
ramona41
Posts: 72
Joined: Jul 2004

catchy dont cha think? so I want to know if any of you guys have the same problems I have or am I just special. I had stage 2 rectal cancer last year, tumor was very low in rectum but i didnt have to have a colostomy bag. Went thru chemo and radiation.. so I have to use the bathroom more frequently and the urgency is something else.I probably have 6 to 8 small bowel movements a day. the main thing i hate is this..sorry if this grosses yall out.. I have to wipe and wipe and wipe.. its embarrassing when i am not at home cause of course i have to flush and flush dont wanna stop up the toilet with that much paper. I have tried talking with my oncologist about this..and I love the guy he is great but to be honest he deals with a lot of differnt types of cancer and isnt a specialist in rectal cancer..today i had to go home from work ..i only work part time with after school kids..i had to go home cause i was going to the bathroom like every ten min..and was pretty useless... when i am out and i get the slightest hint or stomache signal of having to go to the bathroom i have to go right then and there or i might go in my pants..not much but hey any is toomuch.. and sometimes it feels like a bowling ball is trying to come out of my rectum and its not anything like that.. sorry if i am being gross i am not trying to be..i just feel like i am having troubles that mabe i could get help with? do you guys thing i shoudl speak with my surgeon? I havent talked with him since my staples were taken out last year.. but he is a colon-rectal specialist its all he does.. i am also wondering if i will be able to work for much longer.. i have pain from sitting down.. i have to stand on and off again.. unless i am home in a recliner or my bed.. the onco prescribed painmeds for that but i cant take those at work.. and the last pet scan was clear thank god as was my colonoscopy..everything is good..but i am tired of the poop problems..anything you guys do to be more regular and not go so many times? anyone have had a low tumor that left them with a small rectum? my suregon had said my muscles might stretch and things get better over time.. i dont know just tired of being the poop girl.. always have to know where the bathroom is .. carry around a change of clothes in my car just in case.. hoep i dont sound too whiny i know it could always be worse..please if you guys have these problems would ya let me know? or if you have any suggestions i would love to hear them..thanks peace... ramona the poop girl

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Sorry guys but this one has my name on it. I feel your pain Ramona, I was in a situation similiar to yours, but mine was worse. I went all day and all night. I had constant but burn and cried daily. 18 mos. after my ileostmy reversal I had a colostomy done. that was in Jan. of this year. I have my life back. If you want to email me through this site, we can talk more. Trust me, I wouldn't have picked any of this, but it's not so bad. i can go anywhere, eat any thing and I work full time. Before i felt like I was tethered to a toilet.

One thing you might want to try is metamucil. Alot of people take that and it helps, it didn't help me though.

Keep us posted.

Maureen

houseofclay
Posts: 63
Joined: Nov 2004

Ramona: Thanks for feeling comfortable enough to bring up what can be an embarrasing topic. My husband has rectal cancer and went through similar treatment except he had his entire rectum removed. Some days he has normal bowel function more or less, but other days he might be in the bathroom lots. I know his colon and rectal surgeon has said there are lots meds that can be given to slow down the urgency and frequency. He has not needed them as of yet but many things exist.

Another thing that we found helpful is to eat smaller meals and a couple of snacks so that the urge to go is spread out across the whole day.

I am sure this has been mentioned but if all else fails, people do decide to have a permanent colostomy in order to lead a normal life. By no means am I saying you should do this yet but knowing that there are options might help you find a good solution.

I don't know where you live but I am a member of the Colon Cancer Alliance and you might get some good information at ccalliance.org.

Andrea Clay

johnom's picture
johnom
Posts: 86
Joined: Jul 2004

HI, Ramona. I also had stage 2 rectal cancer last year with chemo/radiation, a low anterior resection in May, and more chemo thereafter. In truth I had just begun to despair when it all got better for awhile. When I traveled I took immodium before boarding a plane. Then I took it whenever I just wanted to plug up for awhile. I started quesitioning if I would be living off of it for the rest of my life. Now, 16 months after surgery and most of the problems you describe it is finally slowing down. I am not normal and I don't trust myself without finding a bathroom but I've learned a few tricks. When you get down to 3 a day you are way, way towards home. Everything everyone says is right. Eat a bunch of very small meals; eat a ton of fiber; push the fluids. I had to run out of my seat during a movie and didn't make it to the toilet before all hell broke loose. Utterly embarrassing, and almost every semi-colon will tell you similar stories. However, in most cases, it will resolve itself as your body learns to adjust to your need to wait. It is a training exercise and it does happen over time. I tried fasting for a day with some success to slow things down. I know I can never eat chocoloate again, but I probably shouldn't anyway.
I assume you carry aloe vera wipes with you, as well as immodium, spare underwear, etc. It's a pain in the..............ooops, I swore I'd never say that again last year. Take care. Good luck and hang in there for awhile longer.

John

Kelli22
Posts: 9
Joined: Jul 2009

Hi John, although I don't have any advice for Ramona [because we just found out] her comments caught my attention because my husband seems to be experienceing this issue already. I just read this along with your profile and it was very imformative I must say. I took My husband last Friday to the ER for an ebscess. While surgecally removing the abscess the surgeon found a tumor very low in the rectum. It was confirmed to being cancer. He can't even begin anything until the abscess is completely healed but it sounds like were in for a long road ahead. I hear folks taking about stages, when do we find out what stage? Is that by the oncologist?

taraHK
Posts: 1961
Joined: Aug 2003

Hi Ramona,
I certainly wouldn't want to push you -- or anyone -- towards a permanent colostomy. But, as someone who has one already (as a result of a very low rectal tumour) I can tell you in all honesty that it ain't that bad. Yes, it is different, and an adjustment. But, quality of life is good. I'd be happy to answer any questions you might have about permanent colostomy. But I certainly wish you all the best with other options, including diet and time....
Tara

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

Ramona,
I had my rectum removed, but surgeon was able to spare the sphincter muscle. I have had a lot of difficulty with frequent stool, esp while i was on chemo. I rarely felt like i emptied completely and was always in the bathroom. I still am somewhat dependant on knowing where the bathrooms are, but am doing much better since I made a few changes. I got some of this info from the MD Anderson website (diet for after colorectal surgery). I started taking 1/4 dose metamucil with as little fluid as I could manage after breakfast (be sure to drink plenty of fluid later on). THis is supposed to help slow things down. After a couple of days i added 1/4 dose after supper, again with just a little fluid. I gradually increased this to full dose in AM, 1/2 dose after lunch and 1/2 dose after supper. I still go often, but it is usually clustered around morning or evening time and i definitely have times when I actually feel like i've emptied (who knew this could feel so good). They also have other recommendations which you can read at their website. Didn't work for me (includes prune juice, and since i had the botox inj for anal fissure i have issues with incontinence if stool is too loose). I also added a raw carrot (1/2 in AM and 1/2 in PM). I swear this has helped me, though I don't know why. I just know on the days i forget I have more difficulties. Small frequent meals help too.
Anyway, this has helped me so much that I am no longer contemplating a colostomy (though all bets are off if i have to go back on chemo!).
Good luck!
Mary
P.S. You're right! Catchy title!

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tkd3g
Posts: 768
Joined: Aug 2004

Wait a minute...did I write this post? I'm living it with you , my friend. It's weird to write about such "gross" personal stuff, but it helps.

I had 90% of my rectum removed. I feel the same exact things as you do.

( the wiping part toatally sucks !)

The only thing that I can offer here, is a self massage of the abdominal area. My daughter has cronic constipation. One of her physical therapists showed me how to massage the belly to help things along. I do it cautiously, because of the surgery. It does seem to help a bit.

Good luck. If you come up with anything that really helps, please let me know.

Barb

neeliec
Posts: 106
Joined: Mar 2005

Check out the low residue diet. After having all my colon removed, Iam on this diet most of the time, but always experiment with eating more healthy, and paying attention to the effects. Once you learn what foods help you not go all the time-- it will be easier. Some foods are just like laxatives for me, unfortunately they are the ones that are healthy and the ones I like. Do a search on the internet for low residue diet-- it may help you for a while.

ramona41's picture
ramona41
Posts: 72
Joined: Jul 2004

wow thank you all sooo much for posting..I appreciate allthe advice and understanding..it feels good not to be alone.. sometimes i just wonder..ya know?? like am i the on ly one.. is this just my situation? did my body heal wrong.. but i feel better now.. i will try some of the things you guys mentioned.. am glad someone said something about the healthy things making you go too.. i have tried eating healthier and i swear the fruits and veggies go right thru me.. well that and now i know i cant handle beer.. the next day is a.... ##### ..ha.. thanks again for all the posts.. i feel so much better.. peace and love..ramona.. thepoopgirl who knows she is not alone

serrana
Posts: 163
Joined: Apr 2009

Bravo for starting this topic.......doctors really are no help at all, even the gi specialist I went to so I researched alot and my favorite resource is www.helpforibs.com , the books, teas, organic fiber, and hypnotherapy tapes. What we have with a reconfigured rectum ( j pouch) or smaller rectum or post abdominal surgery behaves a lot like Irritable Bowel Syndrome so use the info about that to help you. It takes a long time to train your body after rectal surgery but it can be done. I am 2 years post reconnection and have a j pouch, I do well now only because I never eat high fructose corn syrup, fresh fruit other than bananna/apple,no alchohol or coffee, no raw veggies at all, no fat (fried food,dark meat poulty, red meat, butter), no milk products.I eat alot of chicken breasts, brown rice, soy milk. Very boring.If you do kegal exercises it will help. I do have about 25 grams of fiber a day and drink two quarts of water every day. Lonox works better for me than immodium because it works differently........stops the peristalsis.......so when I must be sure I'll be ok I take lonox. I never eat when I am going out. My only problem now is I only "go" every 2 or 3 days and then it takes many trips to the bathroom to finish.I am working on this with limited success. I get alot of reading done on those days, hee hee. If you don't have diahreha you won't have accidents so there is some advantage to being somewhat 'plugged" up.
Does anyone out there have the all or nothing syndrome I am describing?
Serrana

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Yes, I know the feeling. I had the colon resection on May 15, 2009. I have turned down many invitations to go for walks and dinner because of this issue. I feel like I am under "house arrest". How do people work in this condition?
---------I am currently trying metamucil which seems to help bulk the stools and makes life more predictable. I still have multiple trips to the bathroom daily but I hope someone has found the answers to this problem. I am still searching.

sig
Posts: 13
Joined: Jul 2009

How are you if still here? I LOVE your posting asking about poop. Quite some years ago. It's me now, sort of. Letsee, I am reconnected since October 30th, 2008, so that's 8 months about. It is sometimes almost normal, and then weeks of what you describe. No matter what I eat, doesn't make any difference that I can figure out yet. If you reply, an update? Sure hope you are well. And if the person who mentioned a raw carrot is reading, wow - gotta try that!

krystle singer's picture
krystle singer
Posts: 109
Joined: Feb 2009

I didn't have the same cancer, but even with "only" a resection I have the most6 used comode in the neighborhood. Our water bills have skyrocketed. I feel your pain! And going out in public..I admit to wearing an adult'diaper'sometimes. Saves on laundry and worry about unsightly and to me, unknowwn stains.
I will join your Poop Group, Ramona. But I can't get any answers from my med professionals either.
Well, think of it this way---the group that poops together stays together.
Seriously, I am sorry you are having so much trouble.

Sending hugs and love your way,
Sandi

sig
Posts: 13
Joined: Jul 2009

I'm happy one of us revived this topic! It was started in 2005, so not sure that person still reading (seems not). Well, let's say poo to all this poop and keep talking! I have read the message now that avoids so many foods - like fresh fruit! Oh no - do we really need to restrict ourselves that much? I am trying to cut down on everything, while it "acts" up, and I also feel like I just need a place here to share this sh.. with you all. Like wiping too much! No one else could understand, and it' not like something you want to mention to anyone, even loved ones. Or, like having it feel like a small sharp twit is stuck in the opening and making the day so uncomfortable. Seriously, finding balance here seems to be the main challenge, and we are all different, but we can chew over this topic and this food won't hurt at all.

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

I am right there with you in this battle of the bowels. I do find that Metamucil is a life saver and eating very small meals. Maybe it is time to buy stock shares in Charmin?

sig
Posts: 13
Joined: Jul 2009

I've avoided metamucil since it was suggested by my dracula-like surgeon (he's good, but scary too). I know there are different kinds, wafers, etc. I also think i'd find it really hard to drink so much water.
I guess I want to aim to use natural fiber foods if at all possible. If you start on metamucil, which so many say IS helpful, do you sort of depend on it forever?
The looseness comes and goes. Sometimes not there at all.
Re stock in Charmin, LOL - on our minds too - we think we have now found a good place to buy in quantity though - delivery company called Alice.
Maybe I should try harder to write down everything I eat...groans...okay...I might!

jdblack
Posts: 2
Joined: Mar 2016

I change my Depends about twice daily because my anal sphincter was loosened as a result of radiation for stage 3 anal cancer. I'm going to try Metamucil  to help make my bowel movements more regular. I'm so sad about having to deal with this, but have to look for solutions.

 

Trubrit's picture
Trubrit
Posts: 5124
Joined: Jan 2013

You have replied to a 11 year old thread, and sadly, no one in this thread posts any more.

Why don't you start a new thread and introduce yourself, and even start a new converstion about adult diapers. 

I see that someone (maybe even yourself) has flagged this post for some reason.  Please don't be offended, just pop onto the forum's main board and start a new thread. Here is a link if you need it http://csn.cancer.org/forum/128.

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Metamucil is a natural laxative... I use the orange flavored metamucil (twice a day) in a cup of warm water. It seems to help me eliminate and have a small sense of normalcy.

Foxes
Posts: 2
Joined: Jul 2009

I had anal cancer and was treated with chemo-radiation.
I KNOW what you mean about toilet paper.....wetting it helps.
I bought myself a jacuzzi bidet seat.

One thing I just found out..my skin is friable and excoriated.
They never told me bleeding was expected.
Then I thought if I drank water, took benefiber, flax seed, maybe exercise, and my POOP floated I would not bleed.

NOT TRUE.

Pretzels, popcorn can make you bleed.

Yeah, so the low residue diet or colonocopy prep or whatever might be called for.

Metamucil helps you bulk up it is good if you can not go or you go too much.

I use a ton of paper. I enjoyed finding this post..I dub. ..The latest poop.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

As yes the multiple poop syndrome or"clustering" as my surgeon calls it. Sounds so clinical and nice and clean as just a phrase eh?

So here's what I've found:
1) a bidet is a godsend. Someone's already mentioned it. Saves on TP and the water is very soothing to the damaged tissue. Even Charmin is too rough. Excuse the graphics, but I wipe with TP once or twice for the bulk and then let the water do the rest. Finish up with a shea butter soap or something like that to help soothe butt chafe.
2) A bulking agent really helped me (like Metamucil). I used slippery elm powder and kaolin powder from my naturopath. Also another fiber bulker called Loclo.
3) I used immodium and lomotil. and still will use immodium. During chemo I often had to use everything like the Metamucil plus immodium and then on to lomotil if that didn't work.
4) I use Aquaphor or something like that on my butt crack after getting clean. Good moisture barrier and helps the first wipe with TP go better the next time
5) I will use Depends if I'm traveling or having a bad day (which can be up to 15 times to the bathroom
6) Kegel exercises can help strengthen the muscles of control
7) I avoid dairy especially and wheat and meat (though hubby is a meat eater so unavoidable at times because I encourage his cooking. Unfortunately cherries, a favorite, makes all he** break loose.

Last night I had a "I hate pooh!' session as a coupke of hours went by on thwe throne. However, I can catch up on a lot of reading and I did teach my pup to give me her paw while sitting on th throne (which can be quite exhausting on the butt, leg muscles as well :-)

all the best, Leslie

krystle singer's picture
krystle singer
Posts: 109
Joined: Feb 2009

This thread on poop has been enlightening and comforting. I too use Depends when I am going to some event where I would just as soon not have disaster strike. These adult diapers are not the most comfortable garments, but they do soothe the mind a bit. I don't wear white much any more. Way too chancy. I have had to give up dairy products almost entirely and that puts a real crimp in the Sunday afternoon Dairy Queen runs my husband and I favored for so long. Alas and alack, it just ain't fair. Not only should we buy stock in Charmin, but also in immodium and all the other meds named here! I would but I can't stay out of the bathroom long enough to find a good broker!

Best of luck everyone!

Sandi

sig
Posts: 13
Joined: Jul 2009

"Colorectal" covers a LONG variety of changes, - so colon, rectal, and anal cancer can be very different in the LONG run (pun intended :-).

Seriously, sorry to read about the bleeding after anal cancer or during recovery - after rectal cancer treatments and reconnection (j-pouch here) - i think there was bleeding only twice in early weeks, and very minor luckily for me.

Yet the wiping is so sh...y! I love the idea of a bidet - just no place to put one and too expensive for now. I do travel and when there is one in a hotel - so nice!

It's really great to have a place to talk about this here - it's just impossible to even joke with some friends about it. I was trying to come up with a funny word for my ******* problems - my bum bum, my own ****, my ??? ideas welcome. Something refined, LOL, and also something I can say in public, to let others know why I have this strange look on my face every once in a while (the butt burn).

sig
Posts: 13
Joined: Jul 2009

(just an aside: even here, the system has put asteriks (********) for two words that are real, oh well...can understand we do not want to offend others online, yet hmm...if not with a colorectal group, whom with?)

serrana
Posts: 163
Joined: Apr 2009

See my post above about the clustering or Multiple Poo Syndrome and rejoice that I have had a great non symptomatic week!!!! Normal schedule, normal poo. Wow
My answer.......continue on the diet programs and up the metamusil to 30 grams a day ( I weight 110#), discontinue all lomotil and immodium, laxatives etc. Listen to the Michael Mahoney hypnotherapy CD program for IBS everynite. Wow, instant results. Amazing.
P.S. Check out the different versions of Metamusil....read the labels because some of the variations have bad stuff in them like sugar and sucrose etc. Get the simplest variety and have several tabs w/ each meal. Amazing. It has been 6 days of joy. Not getting my throne reading done tho. LOL
Serrana

mbarron
Posts: 1
Joined: Jul 2009

My husband was diagnosed with colon cancer in Nov 1999 and I'm happy to say that he is still cancer free. He has been dealing with these same issues for many years now and I obviously don't have to tell you of his frustrations. He has tried all the diet, fiber, and Immodium options that you have mentioned with little real effect. Heres a new one that you have not mentioned and has been more reliable for him than all the previous.

After seeing his gastroenterologist for a followup colonoscopy last year, my husband discussed his chronic diarrhea again with the doctor. This time the doctor had a different suggestion in the form of a medicine called Welchol. My understanding is that while this medication is for treatment of High Cholestorol, one of the few side effects is constipation. The doctor suggested that this might be just the effect that my husband needed. Seems that "Bile Acid Diarrea" is common in people who have had surgery or other damage to the small or large intestine or gall bladder surgery. Welchol is a "Bile Acid Sequestrant" or binder and causes the high level of bile to pass through while greatly diminishing the cause of his chronic diarrhea. While it is not a complete resolution, it has been the best solution we have found.

Google Welchol and "Bile Acid Diarrhea" and then talk to you doctor. Then please post your results to see if it works as well for others as it did for him. Good Luck and continued health.

sig
Posts: 13
Joined: Jul 2009

great news serrana! keep it up! in, down, low :-).
a week of comfort and joy.

and interesting to learn about welchol - i tend to stay away from any meds if i can - yet might be the answer for folks with high cholesterol too;

sig
Posts: 13
Joined: Jul 2009

anyone use fleet (enema) when the feeling is there? during year of treatments, i was told not to, but now, wondering if it's okay for occasional relief;
how to say this - it's not constipation per se, it feels like just heaviness in there all day long;

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Metamucil is a natural laxative and really works. I have had a glass of warm water with the orange flavored or the Apple wafers. The wafers taste like cookies and that heaviness feeling will disappear!

sig
Posts: 13
Joined: Jul 2009

a friend gave me some benefiber to try - seems to help some...a white powder easy to mix with anything; tasteless it seems. hope you all having a good summer!
(had bought the metamucil wafers to try also - no effect at all on me;
vive la difference :-)

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