Kind of discouraging

RoseC

Hi everyone - I'm almost five years out of treatment. All of last year I dealt with uncontrollable diarrhea. I finally got a handle on it by watching my diet, taking Metamucil, and using Immodium (actually, the drug store equivalent). This weekend I decided to forego the Immodium only one day. I just went down to fix my husband some dinner and had a small accident - small and easily cleaned up, but so discouraging all the same. Totally unexpected. Sure, there are lots worse things that could happen - but I feel like such a putz. Thanks for listening - just had to talk to someone who would understand. Just took two Immodium - like I said, it's hardly the worst thing that could happen but it's so humiliating.

mp327

Rose

I'm so sorry this happened to you, but I can certainly relate.  I went out to lunch with a couple of friends on Monday and Tuesday I began experiencing diarrhea, even a little bloody at times.  My guts have been out of sorts all week.  I truly think that I must have picked up some kind of an intestinal bug, but told myself that if it wasn't improved by this next Monday, I was going to call my doctor.  I have been doing the BRAT diet a lot this week, trying to slow things down.  I consulted Dr. Google too and found there are lots of intestinal bugs that can cause such symptoms.  I am relating it all back to the lunch I ate on Monday and still think I ate something that was contaminated.  I didn't make it to the bathroom in time a couple days ago.  It is so demoralizing, so I totally understand how you feel.  I also read during my search on Google that if you suspect an intestinal bug, you should not take Imodium, as this will cause the bacteria to remain in your intestinal tract longer.  I had been taking it every few hours until I read that, but have since stopped.  Things have slowed down and I actually went out shopping for awhile today.  But I was glad to get home and have a little toilet time, if you know what I mean!  I'm sure your incident was isolated, so don't let it get you down!

pializ

Rose

Twice this week I have had diarrhoea (usually just have cluster bm's in the morning), but ate out and I guess some of the recipe ingredients have irritated me. I thought it had passed, but had a slight 'accident' whilst out shopping this afternoon. I get what you mean by humiliation!. I find if I use immodium even at the lower dose it has a knock on effect of constipation for a couple of days so I avoid it if at all possible.  I am just about 6 months post treatment,  so I know al this can change at any time. The thought of the incidents this week being a regular occurence leave me feeling daunted. But, I am getting to understand that we grow used to dealing with all this palava as it happens. I know if I need to take anything regularly, I will, because it makes the difference to our dignity & quality of life. Meanwhile, I do understand how distressing this is for you. I don't think it's asking too much to have dignity........But you wilL ha

ndle this. From your other posts I get theimpression you have a good attitude which will really help. However, you are allowed a moment to feel like a putz, but not for too long ok? Liz

RoseC

Thank you

Thanks - sometimes it really helps to talk to those who understand. It's such a yucky thing. Be well.

Marynb

Inflammation
Hi Rose,

Sorry you are experiencing this! I am wondering whether you have ever been tested for common food allergies? When I continued to have issues after 2 years, the doctors said it could not be from treatment. I was a tad skeptical, but agreed to have blood tests for food allergies. Turns out, I had a food allery to wheat and eggs. Real allergies. This causes inflammation in the body and also contributes to the susceptability to cancer. When I slip and eat foods that contain wheat or eggs, which is most processed foods, my issues return. It can't hurt anything to see a specialist and get tested. Don't be so quick to assume this is a result of the treatments. You may have had an underlying condition all along.

z

RoseC said:

Thank you

Thanks - sometimes it really helps to talk to those who understand. It's such a yucky thing. Be well.

Rose

Hi, You are not alone with this issue.  I am 4 years out and still have accidents.  I can take the blame because I wait to long and then I won't make it.  Much better of course than what it was in the beginning. 

So for the 6 month post treatment poster it is very common to have accidents but it will get better.

There was a poster that was at a dress shop trying on a beautiful dress and had an accident while trying the dress on and it was all over the dress.  She ended up leaving the dress there and left the store.  I don't remember if it was on this discussion board or not. 

I have been fortunate to have been alone in the car or at home when I have had my accidents.

I wish us all well. Lori

 

jcruz

This is one of my small fears

This is one of my small fears and I've had some little accidents at home and a few close calls at work.  I'm still pretty new in recovery, 9 months post-tx, and working out the kinks.  I'm taking imodium and metamucil and still being really careful about food.  One thing that I am experiencing (and it is a small humiliation) is the inability at times to hold in gas.  I just can't help it and the farts just go.  This happened recently at work while I was talking to one of our student assistants, probably 20years old.  All I could do was say excuse me but inside I was just wishing I could disappear.  I was so embarassed, the gassy old lady.

I'm doing exercises to strengthen my sphincter.  Sure hope it helps.

I love the picture of your kitties!  They are such good company.

mxperry220

Two A Day

I am 4 years 6 months post treatment and have been taking 2 immodium daily and have had no diarrhea.  The doctor has told me they will not harm me.

Mike

lp1964

Watch the salt and sugar!

Hi everyone,

Dealing with the same issues. I infact have a minor constant leakage so I keep a pad of tissue paper in the crack that I change many times a day. Helps to silance the flatulation too that one of the patients mentioned here. 

SALT & SUGAR! Salt AND SUGAR draws water to itself from your blood and cells, so if you have too much of it, it will draw water into your intestines, therefore causing diarrhea and subsequent dehydration. You especially have to watch eating out since restaurants from fast food places to quality restaurants put insane amount of salt and sugar in their food and sodas, because it enhances flavor. Salt like sugar is addictive. If you are used to high quantities, with less, the food tastes like grass and the drink like coffee tastes like water. In sodas they put the sugar in there in the form of corn syrup, because this way they can dissolve 10 times more sugar in the same drink. Now especially fast food places combine salt and sugar in meals, because they cover up each other. Together they can put 5 times more sugar and salt in there than they could one without the other. If they didn't compensate the taste of salt with sugar and vica versa, it would taste terrible, but together they taste good. So they saturate your body with salt and sugar and if that level falls under a certain amount, guess what? You start craving it and running back for more.

I hope this makes sense and helps. All the best,

Laz

RoseC

Marynb said:

Inflammation
Hi Rose,

Sorry you are experiencing this! I am wondering whether you have ever been tested for common food allergies? When I continued to have issues after 2 years, the doctors said it could not be from treatment. I was a tad skeptical, but agreed to have blood tests for food allergies. Turns out, I had a food allery to wheat and eggs. Real allergies. This causes inflammation in the body and also contributes to the susceptability to cancer. When I slip and eat foods that contain wheat or eggs, which is most processed foods, my issues return. It can't hurt anything to see a specialist and get tested. Don't be so quick to assume this is a result of the treatments. You may have had an underlying condition all along.

Thanks Marynb

Getting tested for allergies is a good idea - thanks. I'll ask my pc about it next time I see him. Up until treatment I was able to eat anything and everything. Course I did have bad problems with constipation, so maybe even though I thought I could eat anything, I was wrong. Plain white bread doesn't bother me but I think eggs do. I cut them out last year after twice having the runs right after eating eggs. Eating soluble fiber first at any meal has helped a great deal. And I eat a lot of the hommus you recommended, with pita bread. I will ask about getting tested for allergies - thank you for the idea.

RoseC

jcruz said:

This is one of my small fears

This is one of my small fears and I've had some little accidents at home and a few close calls at work.  I'm still pretty new in recovery, 9 months post-tx, and working out the kinks.  I'm taking imodium and metamucil and still being really careful about food.  One thing that I am experiencing (and it is a small humiliation) is the inability at times to hold in gas.  I just can't help it and the farts just go.  This happened recently at work while I was talking to one of our student assistants, probably 20years old.  All I could do was say excuse me but inside I was just wishing I could disappear.  I was so embarassed, the gassy old lady.

I'm doing exercises to strengthen my sphincter.  Sure hope it helps.

I love the picture of your kitties!  They are such good company.

Jcruz

Right after treatment I had a lot of issues with leakage and gas. The sphincter exercises really helped. Still have some issues, but not nearly as many. And the gas - yes! So embarassing. But so human. Sometimes I sit at my desk and wonder who around me is letting 'go' right now, haha! (Meaning, it helps to know that everyone has gas. People who haven't had our kind of treatment have an easier time controlling it - but everyone has gas.) It's so weird that people can honk their noses and burp and those things are acceptable but letting go of one isn't. Just the way we're brought up I guess - I remember all the jokes about gas when I was a kid - must stick with us.

RoseC

mxperry220 said:

Two A Day

I am 4 years 6 months post treatment and have been taking 2 immodium daily and have had no diarrhea.  The doctor has told me they will not harm me.

Mike

Hi Mike

The immodium helps a lot. I only need to take about 3 pills a week but if I don't remember, I pay for it. Thanks for the information.

RoseC

z said:

Rose

Hi, You are not alone with this issue.  I am 4 years out and still have accidents.  I can take the blame because I wait to long and then I won't make it.  Much better of course than what it was in the beginning. 

So for the 6 month post treatment poster it is very common to have accidents but it will get better.

There was a poster that was at a dress shop trying on a beautiful dress and had an accident while trying the dress on and it was all over the dress.  She ended up leaving the dress there and left the store.  I don't remember if it was on this discussion board or not. 

I have been fortunate to have been alone in the car or at home when I have had my accidents.

I wish us all well. Lori

 

Thanks Lori - I remember that

Thanks Lori - I remember that post! It happens, but it sure ain't pleasant. I've been fortunate too - some very close calls at work and in the supermarket, but mostly at home. And not that many. I know some folks deal with it on a daily basis and my heart goes out to them. I found something that really helped last year, when things were really out of control. I read a book for people with IBS and in the book it was recommended that we eat only soluble fiber first. Let that go down first then eat small amounts of the other foods. Small portions several times during the day. This method worked amazingly well for me. The daily runs I'd been having disappeared along with the urgency. It's been working now for about 7 months. I think this weekend I just let things go - didn't eat my normal diet and even had a couple of beers. Back to the old diet for me (but I AM going to have a beer now and then).

RoseC

lp1964 said:

Watch the salt and sugar!

Hi everyone,

Dealing with the same issues. I infact have a minor constant leakage so I keep a pad of tissue paper in the crack that I change many times a day. Helps to silance the flatulation too that one of the patients mentioned here. 

SALT & SUGAR! Salt AND SUGAR draws water to itself from your blood and cells, so if you have too much of it, it will draw water into your intestines, therefore causing diarrhea and subsequent dehydration. You especially have to watch eating out since restaurants from fast food places to quality restaurants put insane amount of salt and sugar in their food and sodas, because it enhances flavor. Salt like sugar is addictive. If you are used to high quantities, with less, the food tastes like grass and the drink like coffee tastes like water. In sodas they put the sugar in there in the form of corn syrup, because this way they can dissolve 10 times more sugar in the same drink. Now especially fast food places combine salt and sugar in meals, because they cover up each other. Together they can put 5 times more sugar and salt in there than they could one without the other. If they didn't compensate the taste of salt with sugar and vica versa, it would taste terrible, but together they taste good. So they saturate your body with salt and sugar and if that level falls under a certain amount, guess what? You start craving it and running back for more.

I hope this makes sense and helps. All the best,

Laz

Hi Laz

I had the constant leakage for several months after treatment but it did resolve - hope yours does too. Sphincter-tightening exercises helped a lot. Thanks for the info on sugar and salt - one of my favorite things to eat together (in times past, not now) was brownies and potato chips - aka, sugar and salt. So I can understand why together they'd taste good combined. Thanks again - all the best to you too.

mp327

lp1964 said:

Watch the salt and sugar!

Hi everyone,

Dealing with the same issues. I infact have a minor constant leakage so I keep a pad of tissue paper in the crack that I change many times a day. Helps to silance the flatulation too that one of the patients mentioned here. 

SALT & SUGAR! Salt AND SUGAR draws water to itself from your blood and cells, so if you have too much of it, it will draw water into your intestines, therefore causing diarrhea and subsequent dehydration. You especially have to watch eating out since restaurants from fast food places to quality restaurants put insane amount of salt and sugar in their food and sodas, because it enhances flavor. Salt like sugar is addictive. If you are used to high quantities, with less, the food tastes like grass and the drink like coffee tastes like water. In sodas they put the sugar in there in the form of corn syrup, because this way they can dissolve 10 times more sugar in the same drink. Now especially fast food places combine salt and sugar in meals, because they cover up each other. Together they can put 5 times more sugar and salt in there than they could one without the other. If they didn't compensate the taste of salt with sugar and vica versa, it would taste terrible, but together they taste good. So they saturate your body with salt and sugar and if that level falls under a certain amount, guess what? You start craving it and running back for more.

I hope this makes sense and helps. All the best,

Laz

Hi Laz

I'm glad you posted the above information.  While I know that food manufacturers and restaurants put things in food that make it addictive, for lack of a better word, I really lose sight of that.  I am totally addicted to sugar and can't seem to break the cycle of cravings.

lp1964

mp327 said:

Hi Laz

I'm glad you posted the above information.  While I know that food manufacturers and restaurants put things in food that make it addictive, for lack of a better word, I really lose sight of that.  I am totally addicted to sugar and can't seem to break the cycle of cravings.

Sugar addiction!

The cells of our body are very simple: the only they need is sugar and and oxygen to exist.

The lack of either of these is a major emergency for the body, so if they are low we panic and if they are getting low we crave the things that resuply them.

When you eat or drink a lot of sugar your blood sugar level goes up. Then you start making insuline to bring it down to normal, but often insuline overshoots and the blood sugar gets too low and that puts your body in panic and you eat or drink more sugary stuff.

And we are not only talking about straight sugar, candies, cookies, sodas. Your body can make sugar out of pasta, white flower, white bread in 5 minutes. Brown and whole wheat products are better, because it takes longer for the body to make sugar out of them so your blood sugar level is more even.

Now, this is how you break sugar addiction: it starts in the morning with your breakfest. What is the typical American breakfest: cerial, pancakes, donut, croissant, toast, Orange juice. All sugary and easy carbohydrate stuff. Your blood sugar goes up, then it drops, then you crave and consume sugar again to fix it and it goes up and down all day, so you consume mainly carbohydrates.

If you ate protein rich and whole wheat breakfest this would not happen, your body wouldn't crave sugar all day. So eat eggs, bacon, oatmeal, yoghurt, milk etc.

There is a saying that: "what you eat is what you are." I would correct that to: "What you eat for breakfest is what you are." Because the food group you eat for breakfest will determin what your body craves all they long.

I hope this makes sense and helps.

Laz

qv62

Rose, I can sympathize with

Rose, I can sympathize with your situation, although I have not yet had treatment,I have had many surgeries that have caused damage to my sphincter, I must wear a pad everyday, I get up for work an hour earlier than I have to in oreder to get ready for work, I am in the bathroom for bms for 3-5 times before I can take a shower and start to get ready like a normal person. I have had to leave certain situations due to accidents, I always carry wipes, extra pads, desitin and sometimes extra underwear (have thrown out countless pairs as well) I fear when I am out to lunch that I need to know where a bathroom is at all times. I went through months of physical therapy and had a decrease in both leakage and accidents however since my pt ended I have had another surgery and several biopsies, and seem to have to startover each time, I invested in a biofeedback machine in order to do the exercises at home and avoid going to pt to save time and $ (although pt was the best thing I could have done) I also take Konsyl everyday and if I don't I pay the price, I have a hard time when away from home but keep on going or I would be a prisoner in my own home if I let it get in the way, I hope you have some relief soon

mp327

lp1964 said:

Sugar addiction!

The cells of our body are very simple: the only they need is sugar and and oxygen to exist.

The lack of either of these is a major emergency for the body, so if they are low we panic and if they are getting low we crave the things that resuply them.

When you eat or drink a lot of sugar your blood sugar level goes up. Then you start making insuline to bring it down to normal, but often insuline overshoots and the blood sugar gets too low and that puts your body in panic and you eat or drink more sugary stuff.

And we are not only talking about straight sugar, candies, cookies, sodas. Your body can make sugar out of pasta, white flower, white bread in 5 minutes. Brown and whole wheat products are better, because it takes longer for the body to make sugar out of them so your blood sugar level is more even.

Now, this is how you break sugar addiction: it starts in the morning with your breakfest. What is the typical American breakfest: cerial, pancakes, donut, croissant, toast, Orange juice. All sugary and easy carbohydrate stuff. Your blood sugar goes up, then it drops, then you crave and consume sugar again to fix it and it goes up and down all day, so you consume mainly carbohydrates.

If you ate protein rich and whole wheat breakfest this would not happen, your body wouldn't crave sugar all day. So eat eggs, bacon, oatmeal, yoghurt, milk etc.

There is a saying that: "what you eat is what you are." I would correct that to: "What you eat for breakfest is what you are." Because the food group you eat for breakfest will determin what your body craves all they long.

I hope this makes sense and helps.

Laz

Laz

Everything you posted is true.  However, my situation restricts what I can eat.  I have a history of partial intestinal blockages, one serious episode that put me in the hospital, thought to be due to adhesions from my radiation treatment.  If I consume some foods that have a high fiber content, such as whole grain breads, brown pasta or rice, or oatmeal, I run the risk of another blockage.  I cannot eat beef anymore and I will not eat any meat that contains nitrates/nitrites, such as bacon.  I do eat a lot of eggs and yogurt, however, and try to get a lot of protein through chicken and turkey.  Eating, for me, has become quite the challenge and downright scary at times.  My doctors all tell me I should be able to eat whatever I want.  I've tried that a few times and the results are never good.  What I miss eating the most is fruits and vegetables.  I can only eat them in small amounts and only if they are cooked--nothing raw.

Thanks again for the information.   

lp1964

mp327 said:

Laz

Everything you posted is true.  However, my situation restricts what I can eat.  I have a history of partial intestinal blockages, one serious episode that put me in the hospital, thought to be due to adhesions from my radiation treatment.  If I consume some foods that have a high fiber content, such as whole grain breads, brown pasta or rice, or oatmeal, I run the risk of another blockage.  I cannot eat beef anymore and I will not eat any meat that contains nitrates/nitrites, such as bacon.  I do eat a lot of eggs and yogurt, however, and try to get a lot of protein through chicken and turkey.  Eating, for me, has become quite the challenge and downright scary at times.  My doctors all tell me I should be able to eat whatever I want.  I've tried that a few times and the results are never good.  What I miss eating the most is fruits and vegetables.  I can only eat them in small amounts and only if they are cooked--nothing raw.

Thanks again for the information.   

Dear mp,

Your diet doesn't sound bad to me.

What makes you think you are addicted to sugar then?

Laz

mp327

lp1964 said:

Dear mp,

Your diet doesn't sound bad to me.

What makes you think you are addicted to sugar then?

Laz

Laz

Years and years of sugar cravings, giving in to those cravings, knowing that the cycle just continues to perpetuate itself.  I eat lots of healthy foods, but they are always followed by something sweet.  I am definitely a carbaholic. 

sandysp

qv62 said:

Rose, I can sympathize with

Rose, I can sympathize with your situation, although I have not yet had treatment,I have had many surgeries that have caused damage to my sphincter, I must wear a pad everyday, I get up for work an hour earlier than I have to in oreder to get ready for work, I am in the bathroom for bms for 3-5 times before I can take a shower and start to get ready like a normal person. I have had to leave certain situations due to accidents, I always carry wipes, extra pads, desitin and sometimes extra underwear (have thrown out countless pairs as well) I fear when I am out to lunch that I need to know where a bathroom is at all times. I went through months of physical therapy and had a decrease in both leakage and accidents however since my pt ended I have had another surgery and several biopsies, and seem to have to startover each time, I invested in a biofeedback machine in order to do the exercises at home and avoid going to pt to save time and $ (although pt was the best thing I could have done) I also take Konsyl everyday and if I don't I pay the price, I have a hard time when away from home but keep on going or I would be a prisoner in my own home if I let it get in the way, I hope you have some relief soon

Curious

qv62

Did they perform these surgeries on your sphincter at MSK?

Just wondering,

Sandy