Something that seems to work for diarrhea
 

Being on Tykerb/Herceptin comes with the extra-exciting and totally unpredictable experience of IBS like symptoms (I don't have IBS, but my symptoms seem very IBS like)... for one week or month everything can seem perfectly normal and then suddenly without warning I will get a day (or 5) that amount to oops, hello, ummmm, where's the nearest bathroom, and I mean NOW?

I want to share with my sisters and brothers two things I have learned recently that seem to REALLY help keep things REALLY normal (and hopefully consistenly normal with no surprises), at least for me. (check with your doctor first, but this is what my gastro doc has asked me to try - with fantastic results, I must say...)

1. as I posted recently somewhere, it seems for me at least, that chewing gum increases and helps instigate IBS like symptoms. I only started chewing gum occasionally in the last 6 months, and I can tie a number of IBS attacks to the times that I have put a new pack of DoubleMint in the car and chewed through it... usually in about a week's time. I then learned from a friend with real IBS that chewing gum is a no-no for her. So, I have stopped the gum and it seems to have helped many of those symptoms stop as well.

2. My Gastro doc has offered a solution as well. He wants me to be able to tolerate my Tykerb/Herceptin regimen with as little side effect as possible so he works with me to come up with solutions. This one he asked me to try a few months ago, but I put it off because I was having a "good month" and thought everything was normalizing on its own accord... until it wasn't. So, I have been doing what the doc ordered and the result in just a few days time has been extraordinary in my opinion...

Citrucel. Dietary fiber (which I always thought was for constipation and was counterintuitive to what I was experiencing... but I was wrong - it is a normalizer for symptoms that span the range from constipation to diarrhea). Simple, straight forward, successful. I bought the pills instead of the powder. I take two a day and WOW.

So my friends, just wanted to share some poop (pun intended) with you on a great solution should anyone be looking for a great solution...

It really has me whistling dixie these days!

Generous of ya to share the poop. I owe you. If no citrucell is at your command, white rice has been know to slow the flow. Worked for me after a trip to Paris gave me an undesired souvenir.

I have been eating the BRAT (Banana, rice, applesauce, toast) diet regularly to help with symptoms since starting Tykerb over 2 years ago. It really does help, but the Citrucel is something that my Gastro wanted me to try on a daily basis to help normalize things so that I wouldn't have to invest in an Immodium factory - and I have to say... it seems to be a fantastic solution so far! That and a good, fresh, mostly organic, no junk/fast food, clean, healthy diet without gum, and I think I am good to go... literally and figuratively.

Thanks for the info. I am also struggling with the poop disorder. I think, for me, it's the two years of tykerb. I am also trying some new things to help. I ordered my supplements and will let you know what works.

Flori

2 citrucel a day - makes the Tykerb pooterookis go away... at least for me, for now.

Re: Something that seems to work for diarrhea
 

hutchibk,

THANK you!!! for the info on the Citrucel. Good grief I was thinking of buying stock in the company that makes Immodium. As you said, there are days when I'm ok, today is one of the for some unknown reason, where I don't need an Immodium. But some days I don't want to leave the house unless I know precisly where the next toilet will be. It was putting a damper on my life to say the least! Thanks for the scooper poop,
Diannes

Re: Something that seems to work for diarrhea
 

It has continued to help alot, but is not perfect. I don't think anything will be perfect... I still lean on immodium, but not as often as I was. It just takes whatever it takes. I hope it helps you a little too!

Re: Something that seems to work for diarrhea
 

I have been on Herceptin/Tykerb for 9 months now and began having a history of some IBS symptons. When I tried adding fiber to my diet, it made my diarrhea worse. I did find that if I left off the whole grains and raw fruits and veggies along with all dairy products, my symptoms got better. I "googled" diarrhea diet and found a low fiber diet and basicially I follow that until my symptoms go away. I have had a couple of three week periods diarrhea free! Of course, I have to go back to my fresh fruits and veggies and before you know it, I am back to low fiber. Hope this helps for you.

Sandra

Re: Something that seems to work for diarrhea
 

A naturopathic suggested probiotic supplements which have worked wonders for my G.I. tract.

Re: Something that seems to work for diarrhea
 

yes, probiotics are also very helpful. My gastro likes them and also recommends Activia yogurt. I like organic yogurt myself, but am planning to try Activia as well.

Re: Something that seems to work for diarrhea
 

It's been almost two years since I had my last Herceptin treatment. My digestive tract started having some problems since at least January this year. I thought it was caused by eating some very old beef jerky. My family doctor gave me some kind of medicine to control 'irritable bowel'. I took it for two days, didn't like it and quit (especially after reading the description of the drug - something that messes with my Central Nervous System.)

Finally I saw a specialist yesterday. Dr. Erickson is the head of the GI Department at the hospital/clinic. He said that because of the many antibiotics I had taken (the latest one was in early September, according to the record he pulled out of the computer) the 'good' bacteria in the GI tract had been destroyed. Solution? Yogurt - to replenish the bacteria. Two weeks should fix it, he said.

He also said to take Citrucel to increase the 'bulk' (the sweet potato and other veggies were not 'enough', according to him.)

I'm so glad the solution is so simple and easy. Most importantly, he had reassured me about my recent scans. "They looked good," he said. The strangest thing is: I believed him! I've been having problems believing my family doctor and my oncologist. But this doctor who I'd just met had given me such confidence that I trusted him.

He had read my chart/medical record before he stepped into the room. The first thing he uttered from his mouth was: "I've read your chart. You have been through a lot!" After he checked my abdominal area and listened to my heart/lung, he declared: "everything looks good."
What a wonderful experience!

Re: Something that seems to work for diarrhea
 

In Dr. Block's Life over cancer book, quercetin at 250-500mg/day is discussed as a poophylactic. Has anticancer properties too. In other research, Capsaicin (surprise) seems to actually help digestive matters.

Re: Something that seems to work for diarrhea
 

Any progress/further success on the poophylactics?

Re: Something that seems to work for diarrhea
 

Would like to add that often we have problems with osteoporosis on this site, thus we take our calcium supplements. Often what we read tells us we should take calcium with magnesium in a 2:1 ratio. In talking to dietitians and friends I find we often overdo the supplements, not trusting our diets are good enough to provide us with the calcium we need. If you are taking a lot of calcium in conjunction with magnesium you may end up with diarrhea caused by too much magnesium. I am as guilty as the next person and found when I cut back on my supplements of calcium/mag my year of diarrhea was ended....just a thought.

Re: Something that seems to work for diarrhea
 

I went to see a holistic nurse, and she put me on probiotics - like what you find in yogurt only tons more of the good bacteria. I got it at a vitamin shop. In reading about probiotics, it's good for diarrhea and the immune system. I just started taking it a week ago, and I've not had any problems with the big D since then.

Re: Something that seems to work for diarrhea
 

Liz,
Please post the brand, ingredients and amount.

Re: Something that seems to work for diarrhea
 

Probiotics are considered a supplement. The brand I got is by American Health and is called Acidophilus, and it has 3 strains of good bacteria. My nurse told me to just follow the instructions on the bottle, which is a couple tablespoons with every meal (3x/day), but work up to it. So far I haven't taken it but once or twice a day. It has a strong plain yogurt flavor, at least the strawberry does, there are other flavors. There are also other probiotics, some are in a capsule, and some have more strains of bacteria. This brand specifically states on the label: no grapefruit, and since I'm on tykerb for some reason they stress not having any grapefruit or extract, that makes me feel better. Anyway, just google probiotics and tons will come up. I'm curious to know if anyone else out there takes them?

Re: Something that seems to work for diarrhea
 

How much Xeloda and Tykerb is everyone on? I take 2000 mg of Xeloda in the morning, 2000 mg of Xeloda at night and 1500 mg of Tykerb at night. We tried 2500 mg and 2000 mg of Tykerb but both landed me in the hospital with severe diarrhea, dehydration and my kidneys began to go into failure. So the diarrhea is nothing to mess with, do seek help right away.

I just began reading on this website and want to thank you for the advise about citrucel, I am going to ask my onc about it.

Re: Something that seems to work for diarrhea
 

Hi to all who are working through the gastro issues with Tykerb. I had a horrible time getting on it. I had to add one a week for over a month, and now am up to 4 for a month, dreading to go to 5 but probably will. I found that my doc and the staff had NO IDEA about how to treat my really bad diarrhea and stomach upset. I ended up losing close to 25 pound over the last 3 months just because I couldn't eat anything. I did figure out a regime that helped a lot.

First thing in the morning and 2 or 3 times a day I take 2 oz of Aloe Vera juice before I eat. (George's is the best brand as it doesn't feel slimy at all - like water.) The aloe really helps coat your stomach. I also was on Carafate (sp?) as well, it seemed to help my lower GI tract, (it is perscription) and now I am off that.

I take a zantac in the am before my first meal.

When I started, I just automatically took an imodium a day, then I went down to 1/2 and now I am down to as needed, which is great.

The dairy issue is a big one for me - I can't even tolerate youghurt at this point, but I have been able to introduce goat cheese and have done better with that than regular cheeses. I am hoping to start a goat kefir so I can get probiotics better. Regular probiotic supplements from the healthfood store help too.

The biggest thing though is cutting out SALT. The addition of any salt to food creates a terrible problem - it just acts as an osmolytic and pulls the water into my bowels. If I avoid salt in my meals, I am able to go for days without an incident. I even went out to dinner and asked them to hold the salt, and I was good the whole evening. It was great.

Best luck for everyone - and if you find something that works, please post it.

Thanks, Alison

Re: Something that seems to work for diarrhea
 

So...
Citrucel, probiotics, Aloe Vera, Zantac, Quercetin(maybe), low sodium, careful calcium/moderated magnesium..and the big I.

Any updates?