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2 months post treatment, still dealing with diarrhea

Donna M
Posts: 25
Joined: Jul 2010

It is so bad at times, that I can't leave the house. The farthest I have been able to travel is 20 minutes before I start searching frantically for a restroom, and pray that it is somewhat clean. I tried metamucil to bulk up the stools, but then I would start bloating to the 6 months pregnant size, so much trapped gas that would take DAYS to get rid of. No diarrhea, but instead I wanted to throw up all the time even though most of the time there was nothing in my stomach. Couldn't eat, couldn't drink. Stopped taking the metamucil and the bloating went away after a week, but then the diarrhea came right back. I only take pain meds when the pain doesn't go away with sitz baths and salves and starts escalating. It is causing problems with my work since my manager seems to think that the problems stopped when the treatments stopped.

mp327's picture
mp327
Posts: 3206
Joined: Jan 2010

I had this same problem for quite a few months after treatment ended--urgency and frequency. It was debilitating! My rad onc recommended that I routinely take one Imodium tablet daily. I started doing that and it helped. Also, are you keeping a food journal? It helps to track what you eat and what triggers the episodes of diarrhea. The foods you find to be triggers can then be avoided. What gave me the most trouble in the beginning was fruits and veggies, raw or cooked didn't seem to matter. My intestinal tract just couldn't handle them. Eventually, I started adding cooked fruits and veggies back in gradually and was able to begin eating them again with minimal problems. I also found that caffeine and chocolate were triggers. I am now 27 months out of treatment and can pretty much eat whatever I want, so keep the faith! I think it just takes some time. I know it's frustrating, but be patient, it will get better. Try the routine Imodium and see if it helps. I wish you all the best.

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

I agree..caffeine and chocolate are big triggers, as well as fresh veggies. Definitely watch what you eat. Keep a low fiber diet. And Imodium helps some folks. I actually had to resort to Paregoric, but that is extreme and can only be used for a short time. It can take months to settle into a routine.

Many hugs, Vicki

grandma2selena's picture
grandma2selena
Posts: 199
Joined: Jun 2009

Yes, I dealt with the same problem, I discovered I just needed to watch my diet. It does get better. I just watched my diet especially fresh fruits and vegetables. I had times when I didn't make it, luckily never in public. The muscles down there need time to heal, our systems have changed. After I got the balance in my diet I have less episodes.

z's picture
z
Posts: 1302
Joined: May 2009

Hi Donna, I too had incontinance and diarreha for several months. When I had to go I had to go. I returned to work after 2 months out and fortunately I had a bathroom near by, and I new I couldn't hold back. It does get better, it just takes time. Lori

lacer00
Posts: 12
Joined: Jul 2009

I too have constant diarrhea. I take one immodium a day. It does help. I am now doing chemo again because mine metastasized in my lungs and liver. The immodium is the only thing that works. Good luck.

Donna M
Posts: 25
Joined: Jul 2010

Neither Immodium nor Lomitil stopped the diarrhea. I had diarrhea even when I didn't eat. My PCP put me on 1/2 percocet three times a day, then 2 times a day and am now at once a day and it has worked. When I have a proctitis flare up, I still have occasional diarrhea, but when I have a flair up I am on 2-3 percocets every 4 hours, and diarrhea isn't a problem. Now I just have constant bowel inflammation and recurring proctitis. Lovely.

mightysphincter2
Posts: 1
Joined: Apr 2013

So sorry for your ordeal.  It sounds like what I'm going through. I am afraid to exercise, walk, go to far from home, because I have had a number of "accidents".   in 2008 I had intense radiation and chemotherapy, and now am suffering from chronic diarrhea.  My surgeon proctologist tells me it is a delayed reaction.  Five years after radiation.  I am trying to stick to the BRAT diet (Bananas, Rice, Applesauce, Toast), but I still get sick. Even the prescription antidiahrrheal won't work unless I dounble the dosage, when it says take every eight hours, I take it every 4-6 hours. And my insurance won't cover the double dosages, SO I run out. If I skip a dose, I am hit with the "D" word.  I am trying to find others who are suffering late (very late) reaction diarrhea from these treatments.  Once again I am sorry for what's going on with you.  It's hell not knowing when it will hit. ANy recipes of yummy rather than bland food would be appreciated.  I would more likely stick to the BRAT diet if it weren't so flavorless.

 

mp327's picture
mp327
Posts: 3206
Joined: Jan 2010

I'm sorry chronic diarrhea has hit you at the 5-year mark, which is right where I am too, as I will be 5-years post-treatment in September.  The BRAT diet can be helpful, but as I'm sure you know, it's really not good for long-term use.  I'm sorry the anti-diarrheal meds are not working for you.  This sounds like late-onset radiation proctitis.  My issues are bowels that go back and forth from constipation mode to over-drive and I was also hospitalized in late January for a bowel obstruction, most likely due to radiation-induced scar tissue.  Trying to figure out what to eat to keep things on an even keel is quite challenging.

I know that surgery is sometimes done for radiation proctitis, but I'm not familiar with the procedure.  I have also heard of people getting hyperbaric oxygen treatment for it, but that does not sound like a fun option to me.  I think diet is key.  Avoiding caffeine and high-fiber foods can help control diarrhea.  Are you eating yogurt or taking a probiotic?  Also, have you tried taking a physillium fiber supplement to see if that will help to bulk up your stools? 

As for recipes, I'm not sure I can help you there.  I have made foods to help with intestinal blockages, such as creamed soups.  But obviously that is not your issue.  You might be able to tolerate dishes of pasta (white only), meat and cheese.  White rice also.  Those foods tend to slow the bowels down.  In some people, a high-protein diet can have constipating effects. 

If I can gather any more info for you, I will post.  I can relate to your issues and know how frustrating it can be.  I hope you can find some helpful information.  Best wishes.

Marynb
Posts: 1134
Joined: Aug 2012

Seems like most of us battle with this post treatment. Diet becomes really problematic and lots of times, trial and error is the only way we can know what we can tolerate. I benefitted from appointments with a dietiician at the cancer hospital, but that only went so far. One of the things that really helps me is a daily dose of hummus. It is a natural way to add bulk to the stools. I cannot digest any fats at all. Nonfat organic greek yogurt is also a daily requirement for me, 1/2 cup. Meat is totally out for me. It gives me horrible stomach pains, diarrhea, and it is not included on anticancer diets. Fish is pretty safe for me...broiled and NO butter. Green beans are safe for me. I have also eliminated wheat and eggs and eat gluten free only.

I suggest Dr. Fuhrman's book, Super Immunity. He includes research based diet and recipes. Some of the soup reipes are good.

Cancer can be a great impetus for diet change. Good luck.

Magdaleina
Posts: 1
Joined: May 2013

I was diagnosed with anal cancer November 2005....Went through the radiation and chemo...I thouhgt I was lucky...stage 1 diagnosis....90% survival rate...but they left out all the embarassing side effects like diarrhea and flatulence...Well for those of you who are suffering with diarrhea...I had the same problem...afraid to leave the house...go out to dinner...I started to wear a diaper to work...I was too afraid of even 1 accident happening in the work place...I pleaded with my doctors that there has to be something I can do to stop this from happening...and all they can recommend is benefiber or meticucil...well I decided to go my own route and started taking immodium daily...I take 3 tablets in the morning...because of the severity of my diarreah I will still have a bowel movement sometimes during the day but it's normal and not an emergency when I have to go...since everyone is different...I would start off with one...then go up from there...3 is my number...I have never had an accident since starting this regimine 4 years ago...my only problem now is flatulence...which can also be very embarassing...right now I eat very little at work...I tend to drink allot of water and eat small amounts of food frequently during the day...also I found that becoming a vegan and eliminating processed foods has also helped...but I see that someone here recommended Psyllium husk...so I will give that a go...I was taking charcoal and papaya enzyme pills but I haven't noticed any change.

Also are there any women here that haven't been able to assume a normal sex life after treatment?

Thank you,

M

mp327's picture
mp327
Posts: 3206
Joined: Jan 2010

My rad onc also recommended taking Imodium on a daily/routine basis.  I had to do that for awhile and it was helpful.  I think we all fear accidents after experiencing just one.  My biggest issue now is gut pain, most likely caused by adhesions.  I had a serious blockage back in late January for which I was hospitalized.  I am seeing a general surgeon in a couple of weeks to meet and greet so that I have someone lined up to do surgery in the event it is required as an emergency procedure.  Have you had any such issues in your years of post-treatment?  It seems I have gut pain about once a week now.  I am trying to determine if it's caused by certain foods, my exercise program, stress or what!  As for resuming a normal sex life, that would be a "no" for me.  I will be a 5-year survivor in September.  Attempts at sex are frustrating, despite regular use of a dilator.  However, we keep trying.

Congratulations on being an 8-year survivor!  That gives me great hope and encouragement.  I was on the fence between a Stage 1 and 2 and feel that my chances of survival beyond the 5-year mark are very good.  Other than the above-mentioned problem, I have done quite well.  I hope you are doing well too, other than the over-active bowels.  I hope you can get a handle on those issues and I wish you many, many more years of cancer-free life!

sephie's picture
sephie
Posts: 552
Joined: Apr 2009

i am almost 4 years post.... i have still not been able to have normal sex life and i use my dialtor....... this is very discouraging to my docs at MDA....they want me to be normal....but radiation ruins that area......sephie

jena58
Posts: 19
Joined: Apr 2013

I too had lots of problems. I had 'accidents', in the change room of a s ports store! Luckily I had heaps of tissues and just got out of there, in my car and home as quick as I could, one in the supermarket, just left my trolley and ran, another in the car, I had to pull into the first place I could find, a Hungry Jack and, clean myself up in the toilet. If I had got go any where in the morning I had to be up at least 2 hours earlier to make sure I had 'emptied out' before I left the house. I'm a massage therapist and work from home so if my first appointment was 8 am I had to be up no later than 6 am to be ready. I still have to run to the loo within 10 minutes or rising in the morning. It has gotten better over the last 6 months ( I'm 17 months out of last treatment). I found that bread or anything with flour was the culprit, I still can't tolerate it, bloating and diarhia. I refused to give up my greens purely on a nutritional basis, but flour, processed foods and sugar reek havoc. Red meat also, terrible pain. I've found that the 'cleaner' the food, the better I am, I can't tolerate any sort of takeaway, even the good old Aussie meat pie is trouble.

Will_Coons's picture
Will_Coons
Posts: 7
Joined: Feb 2014

Hi Jena -

 

I too am a massage therapist and also a yoga teacher. Since my stage 2 diagnosis and treatment in December 2013 I have been unable to work, and being self-employed I can not draw unemployment insurance nor am I too sick for disability. Money is running out and I will need to try to begin to work again.

My question to you, if you would be kind enough to answer, is how far out post-treatment did you begin to work and how were you able to do it? All my clients know and I am sure some will not return, assuming I am 'sick' and that my energy will not be good for them.

Thank you!

Will ****s

www.massageandyoga.com

Marynb
Posts: 1134
Joined: Aug 2012

I certainly hope that your clients don't avoid you because had cancer! That is ridiculous. I recently had a friend, a devotee of yoga, tell me he believed I got cancer due to "bad karma". I am not a yoga devotee, as I have my own religion and I was really offended! Needless to say, I crossed him off my friend list! After all we have been through, we do not need to deal with ignorance. What irks me the most is the holier than thou attitude of some who claim to be enlightened by an Eastern religion. Who needs that?
I am almost 3 yrs. post treatment and I still have some issues, though much improved, have you tried adding about 1/2 cup of hummus to your diet daily? This really helps me. It adds bulk to the stools. I now take 1 Immodium every morning, on my way to work. I need 2 hrs. In the morning before work to use the bathroom. After that, I take the Immodium.

Lorikat's picture
Lorikat
Posts: 574
Joined: Jul 2011

Sephie, Donna and I sound about the same!  I'm 19 months out of treatment and things don't work the same.  Like Sephie MDA wants me to be better and I AM better, just not great!  I still run to the restroom often, need a couple hours in the morning before I DARE leave the house and need a bathroom within 30 minutes of eating out.  Forget sex because I have!  My lower abdomen is soure/crampy most of the time.  Fatigue?  You bet!

But!! (Or butt!) I am better than before tx!  For two YEARS I was treated for divuticulosis....cramping, bleeding, nausea, fatigue and just general malaise.  ALL of those are betters now after tx.  Sooooo...  that is where I am......  Just glad it's better than it was...

 

sandysp's picture
sandysp
Posts: 853
Joined: May 2011

I GUESS METAMUCIL IS A BRAND NAME FOR PSYLLIUM HUSKS. I USED TO TAKE THEM AT NIGHT WHICH WORKED GREAT, TOO, BUT NOW TRY TO TAKE THEM IN THE MORNING AS RECOMMENDED. I WENT WITHOUT TAKING IT A COUPLE OF WEEKS AGO AND IT WAS A DISASTER. I COULD NOT MAKE IT HOME FROM MY DOCTORS APPOINTMENT. I WAS SO BUMMED BUT KNEW I HAD EATEN LEGUMES THE NIGHT BEFORE AND NOT TAKEN THE HUSKS. EVEN WITH A HIGH FIBER DIET, THE HUSKS ARE A MUST FOR ME. I DO NOT HAVE TO TAKE IMMODIUM if i take the husks every day. IF I TAKE PSYLLIUM HUSKS AND KEEP HYDRATING THROUGH OUT THE DAY, I DO PRETTY WELL. I HAVE GIVEN UP DAIRY COMPLETELY. ACTUALLY I AM NOW VEGAN AND DON'T EAT A LOT OF THINGS I USED TO THINK WERE GOOD FOR ME. DAIRY, AS MUCH AS I LOVED IT WAS A DISASTER FOR ME even though i took it as the nutritionist suggested throughout my treatment in ice cream smoothies and instant breakfast and Ensure. I USE FLAX MILK AND ALMOND MILK IN MY SMOOTHIES. I BUY COCONUT WATER IN THE QUART SIZE AND DRINK IT THROUGHOUT THE DAY. IT HELPS A LOT WITH DEHYDRATION AND I THINK THEREFORE THE BLOATING THAT CAN COME FROM THE FIBER OF PSYLLIUM HUSKS. I BUY ORGANIC UNFLAVORED WHOLE HUSKS. I HAVE NEVER TAKEN METAMUCIL so can't say how it works.

SOME VEGGIES ARE WORSE THAN OTHERS. I HAVE TO AVOID THE BROCCOLI CABBAGE FAMILY UNLESS VERY VERY WELL COOKED, and you just heard what happens when I eat my favorite food, black eyed peas! BUT I CAN EAT CELERY WITH NUT BUTTER, grated carrots are better than chunks, i love greens, raw sweet potatos and turnips AND MOST FRUITS. I MOSTLY EAT BANNANAS  AND PUT FROZEN CHERRIES, wild BLUEBERRIES, or ORGANIC CRANBERRIES IN MY SMOOTHIES. I THINK IT IS A LOT EASIER TO DRINK NON DAIRY SMOOTHIES DURING THE DAY AND A LIGHT MEAL AT NIGHT. (LIGHT MEAL IS HARD FOR ME!). I AVOID WHEAT ALSO. IT BLOATS ME BIG TIME. SOME PEOPLE SAY TO AVOID MOST GRAINS - EVEN RICE. I FIX GROATS (buckwheat)quite often instead of oatmeal (THEY ARE DELICIOUS) as this is more digestible, am a big fan of quinoa and farrow over rice and potatoes but we do eat sweet potatoes, which are nutritious and digestible. my weird dinner tonight consisted of sweet potatoes and whole foods fresh ground peanut butter and chocolate! Nuts, - particularly walnuts are everywhere in my day.

Anyway, hang in there. You will find your way. We are all different. You will find in time what works for you but I am almost two years post treatment and I too suffer from these problems if I am not very very vigilent. And even then, sometimes there are surprises.

Hope this was helpful,

All the best,

Sandy 

jcruz
Posts: 299
Joined: Jan 2013

Seems like we all have a variation on the proctitis and a variation on what works for us.  I'm 7 months post-tx and I think I'm getting better - have introduced many more cooked veg and a few raw fruits (hooray I can eat strawberries, apricots and peaches).  Better means only 3-4 BMs in the morning and I take 1 imodium at night and 1 in the morning in addition to the metamucil.  I just had an appt with my rad onc and she said to feel free to take more imodium if I felt I needed it.  I had seen my gastroenterologist a few weeks ago about the proctitis and one of the things she suggested after doing some research was sucralfate enemas.  I laughed and told her I just could not imagine poking something up inside my tender you know what.  I think right now I'd rather live the early morning BMs before I leave for work and the guessing game of which foods might be iffy.  I am not ready for twice a day enemas, thank you very much.  I love quinoa but I've been wary of trying it because of the insoluble fiber percentage.  I guess I'll have try it some Friday night for dinner, knowing I'll be home on Sat. morning in case it turns out badly

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

Gee, I guess I have escaped some of the side effects so far. But, as seen on this ebsite, you never know what another month or year will bring. I have no GI symptoms except urgency, so I need to go within minutes, which is actually getting longer 3 months post radiation. I can eat anything and everything, raw or cooked. I wish I couldnot as am 40 lbs >>>. Have no diarrhea or constipation, several narrow stools every day - maybe 3 or 4. That's it.....But the bloating and upper abd growth is incredible and ridiculous....I cannot get rid of it ...yet.... muscle weakness and fatigue is what gets me but am confident that this too will pass. Signed up for local gym YMCA Livestrong Program for Cancer Survivors....what a name. Who thought of labeling all of us as "Survivors" ?  Makes me feel like a victim, not a fighting hero!     

uhkane2
Posts: 2
Joined: Dec 2013

Hi wanted to get an update on your condition.  I have to use much stronger meds at max dosage, 5 lomatils, morphine sulfate 15mg 3x a day and tincture of opium liquid 2x just to stop diarrhea.

mxperry220
Posts: 379
Joined: Mar 2011

I will be five years post treatment the midlle of January 2014.  Even though I do not have diarrhea I have several BMs daily.  My old norm was 1-2 BMs daily.  My new normis 2-3 Bms daily.  I have taken two immodiums daily during and post treatment.  I still use the immodium daily.   My radiologist said there would be no harm in taking them.  I also take a probiotics tablet daily.  I use the Sam's Club equivalent of both.  They are much less expensive than the brand names.   Hope this helps.

Mike

mp327's picture
mp327
Posts: 3206
Joined: Jan 2010

I agree.  I, too, am at the 5 plus-year mark and find that Imodium has to be with me at all times.  My bowels can act up suddenly, when I also find myself having numerous BM's in a day.  Most of the time, it's food-related.  I just returned home from a trip over the holidays that did a number on my insides.  It is so hard when traveling, as we have much less control over what we eat.  I was staying in a hotel and visiting family and was often-times dependent on what they served, which was not always gut-friendly.  I would certainly love to go back to having just one BM per day, but that's not likely.  I have never taken the probiotics in pill-form.  I eat a lot of yogurt--usually twice a day.  I may have to give the probiotic tablets a try.   

Phoebesnow
Posts: 461
Joined: Apr 2011

I returned to work 2 1/2 months after tx.  I took the Imodium in the morning and wokeup 2-3Hours earlier in order to get my going over with.  I usually felt best around 12 pm.  Iwork physically as a landscape designer.  I did not return to surfing until seven months post tx as work was my physical priority.

None of myclients left me.

 

You will find your clients waiting for you.  

 

Hope you feel better soon!

 

 

pamela_preib's picture
pamela_preib
Posts: 54
Joined: Nov 2012

I'm a year out and still have bad days, but also a lot of good. I can find no rhyme nor reason for it. I just eat and hope for the best. I eat healthy and try and stay away from sugar. I am big on chicken and rice. Usually mornings are the worst. Sometimes I'm up in the middle of the night. Then again I sometimes go a few days and feel perfectly normal other than my new pencil sized poo. I am never ever constipated which I think is a huge advantage as that sounds painful.

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