2 months post treatment, still dealing with diarrhea

grandma2selena said:

Oh Yes!
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.

mightysphincter2 said:

chronic diarrhea

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.

 

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.

Magdaleina said:

chronic diarrhea

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

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, 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 said:

PSYLLIUM HUSKS

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 

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

jcruz said:

Seems like we all have a

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

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 said:

Immodium Can Be Your Best Friend

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

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.