Diarrhea and bloating and gas, oh my!

[Jacques]

... I'm now 5'7" and 132 lbs. I guess that's still considered normal...

FYI -
Your BMI (Body Mass Index) is 20.7, which is quite normal. I don't think there's any particular cause for concern right now, but check with your doctor just in case.

BMI Calculator
https://www.nhlbi.nih.gov/health/educational/lose_wt/BMI/bmicalc.htm

[TinaFish]

... I'm now 5'7" and 132 lbs. I guess that's still considered normal...

FYI -
Your BMI (Body Mass Index) is 20.7, which is quite normal. I don't think there's any particular cause for concern right now, but check with your doctor just in case.

BMI Calculator
https://www.nhlbi.nih.gov/health/educational/lose_wt/BMI/bmicalc.htm

Yeah, but I've gone from Kim Kardashian to Kelly Ripa. Scary.

[ginabeewell]

Yeah, but I've gone from Kim Kardashian to Kelly Ripa. Scary.

I'm 5'7" and went from 125 before any of this hit to about 95 lbs at my lowest when I had typhlitis after 5 rounds of chemo (I was maybe 115 at diagnosis). My butt was literally concave once I went under 100. It was not good! I bought myself underpants with padding in them, LOL.

Good to be conscious about weight and continuing to take in calories, but it does not sound like you need to panic quite yet!

I focus on gaining weight back when I have a chemo break, and at last weigh-in two weeks post surgery, I was at 112.

My mantra has been, "When I can, I will." And I remind myself of this when I get frustrated.

I try not to beat myself up when I don't have an appetite for anything - but I also try to make sure I am taking advantage of each and every "maybe I could eat a little something" moment. And eating whatever appeals in the moment. Last night it was two frozen White Castle slider cheeseburgers. The night before, I was in bed at 11 pm and announced I could go for some Kraft mac and cheese - we had leftovers in the fridge, and I was eating them a few minutes later. Post surgery, I have been drinking chocolate milk each day. No judgment on what works for you!

Marijuana mints with a high THC content have been very useful for me when my appetite is just not there. They don't make me high or give me the munchies, but at least it makes the prospect of eating seem tolerable and I can get a few bites of something down.

All this to say, I recognize just how emotionally charged eating is, and I've spent a bunch of time with my therapist learning how to be gentle with myself about it. Honestly, the more gentle I am, the more I feel equipped to manage it like any other side effect, because I'm able to approach it rationally and focus on what I can do versus what I cannot. Emotionally, I find that I cannot maintain a good arc if I am not eating at least semi-regularly. So it's been important for me to figure out how to create and take advantage of windows to do so.

[TinaFish]

Yeah, but I've gone from Kim Kardashian to Kelly Ripa. Scary.

I'm 5'7" and went from 125 before any of this hit to about 95 lbs at my lowest when I had typhlitis after 5 rounds of chemo (I was maybe 115 at diagnosis). My butt was literally concave once I went under 100. It was not good! I bought myself underpants with padding in them, LOL.

Good to be conscious about weight and continuing to take in calories, but it does not sound like you need to panic quite yet!

I focus on gaining weight back when I have a chemo break, and at last weigh-in two weeks post surgery, I was at 112.

My mantra has been, "When I can, I will." And I remind myself of this when I get frustrated.

I try not to beat myself up when I don't have an appetite for anything - but I also try to make sure I am taking advantage of each and every "maybe I could eat a little something" moment. And eating whatever appeals in the moment. Last night it was two frozen White Castle slider cheeseburgers. The night before, I was in bed at 11 pm and announced I could go for some Kraft mac and cheese - we had leftovers in the fridge, and I was eating them a few minutes later. Post surgery, I have been drinking chocolate milk each day. No judgment on what works for you!

Marijuana mints with a high THC content have been very useful for me when my appetite is just not there. They don't make me high or give me the munchies, but at least it makes the prospect of eating seem tolerable and I can get a few bites of something down.

All this to say, I recognize just how emotionally charged eating is, and I've spent a bunch of time with my therapist learning how to be gentle with myself about it. Honestly, the more gentle I am, the more I feel equipped to manage it like any other side effect, because I'm able to approach it rationally and focus on what I can do versus what I cannot. Emotionally, I find that I cannot maintain a good arc if I am not eating at least semi-regularly. So it's been important for me to figure out how to create and take advantage of windows to do so.

So well-put, Gina. I love your advice. I think moreso than being concerned that my weight went down so quickly, I'm concerned that it will continue at this pace. I wish I had more of those "windows" you speak of, but I hope that it's just a matter of getting the Care Oncology meds out of my system.

I woke up this morning feeling pretty decent. I took my three Capecitabine (BTW, the smell of those pills is soooo chemical-y! I really have to force myself) and a probiotic. Went downstairs and made French Toast (with almond milk) for myself and the kids. Almost right after I ate it, I started getting those uncomfortable feelings in my stomach again. It's been about five hours now with tenesmus and a very sore rectum. I took a Bentyl and one Imodium. I also went to CVS and got some Lactaid pills, and then made grilled cheese for lunch.

I feel like I'm stable right now, but I'm still sitting on the toilet every 30-60 minutes in case any minuscule bit of poop wants to come out. I honestly don't see an end to all of this! Shouldn't the Care Oncology meds not be effecting me anymore? The last time I took them was Saturday morning. I'm having trouble believing that my digestive system will ever feel normal again.

[TinaFish]

It's getting better. I ate mashed potatoes last night, with lots of avocado margarine and sour cream. Sounds yummy, right? It tasted like cardboard, and it felt like it was just sitting in my throat and not even going into my stomach. And then heartburn hit me. I took two Tums. The tenesmus kept happening last night, but with less frequency.

When I went to bed, I took my three capecitabine pills, and I also took two cimetidine pills. I think I will be continuing the off-label cimetidine use, at leat until there's a reason not to.

I'm feeling ok waking up this morning. The tenesmus is gone for now and my only real complaint is that something with my stomach is just "not right." No bloating, no gas, no cramps, no diarrhea to speak of; just a weird unsettled feeling. But compared to what I've been going through for the past few weeks, I'll take this any day!

[boxhill]

FWIW, It could just as easily be the coffee in your latte than the milk. Coffee definitely prompts pooping in most of us. Meals with a really high fat content can set things off, too.

I'm glad you are doing better, but I don't understand why you keep taking immodium if you are not actually having loose stools.

[TinaFish]

Aaaaand aside from needing some Bentyl, Lomotil, and Imodium, things went splendidly today! I spent the majority of the day feeling great! I'm expecting tomorrow to be even better than today. Thank God I stopped taking those Care Oncology meds!!

[TinaFish]

FWIW, It could just as easily be the coffee in your latte than the milk. Coffee definitely prompts pooping in most of us. Meals with a really high fat content can set things off, too.

I'm glad you are doing better, but I don't understand why you keep taking immodium if you are not actually having loose stools.

You're right about the coffee. And it was a lot of coffee! With whipped cream!

I keep taking Imodium because even though the stools are normal, there's always diarrhea when I wipe. It seems to me that if there's anything (like diarrhea) in my rectum, the tenesmus is triggered. It's like once my body senses anything in my rectum, it wants to push it out. Tenesmus is so horrible.

Comparing that to when I was a "normal" person, I would wake up in the morning and poop a normal/large amount, and, like clockwork, wouldn't poop again until until the next morning. So my assumption is that all that poop built up in my colon/rectum and just stayed there until my body felt it was time to let it out. If that's how "normal" bodies work, then my hope is that by eliminating my diarrhea, my body can work "normally" by letting the poop build up again before feeling the need to force every tiny bit out of me once it gets to the end of the line.

Does that seem like a good rationale? I don't know. Because truthfully, when you're taking Imodium, there's a fine line between what I just described, and constipation. As long as I don't have any discomfort, maybe I can assume it's not constipation?

I'm keeping a diary of the diarrhea/tenesmus meds that I'm taking throughout the day, and once I get it just right, I'm going to try eliminating certain meds or certain doses, so that I can just be taking the bare minimum. DEFINITELY do not want to cause the gas/bloating/cramping that I was suffering from the past two weeks!

[Jacques]

Have you considered keeping a detailed food-and-toilet log to see if there are any foods/beverages/medications that trigger your bowel problems?

It might be worth a try.

Among the foods/beverages/medications that you have mentioned consuming so far, there are several that are notorious for causing diarrhea, gas, or bloating. Things might go better if you were to change your diet so as to avoid these triggers.
.
https://www.aboutibs.org/signs-and-symptoms-main/symptom-diary-2.html

[TinaFish]

Have you considered keeping a detailed food-and-toilet log to see if there are any foods/beverages/medications that trigger your bowel problems?

It might be worth a try.

Among the foods/beverages/medications that you have mentioned consuming so far, there are several that are notorious for causing diarrhea, gas, or bloating. Things might go better if you were to change your diet so as to avoid these triggers.
.
https://www.aboutibs.org/signs-and-symptoms-main/symptom-diary-2.html

I've kind of just been keeping a mental note of the foods/beverages, but you're right. I should keep a food diary. It should be very easy since I don't snack on random things throughout the day, like I used to. Rather, it's more like, "oh, Tina, you forgot to eat lunch. You'd better go in the kitchen and eat something! What doesn't sound disgusting?" So today, it was fig bars for breakfast, I forgot what (if anything) I ate for lunch, corn on the cob for an early dinner, a cheese and green chile tamale for late dinner, then canned mandarin orange, and then a chocolate bar now, in bed. Probably not the best choices, but really the only things that didn't seem disgusting today. I'm going to read your link right now!

[Rock_Robster]

Have you considered keeping a detailed food-and-toilet log to see if there are any foods/beverages/medications that trigger your bowel problems?

It might be worth a try.

Among the foods/beverages/medications that you have mentioned consuming so far, there are several that are notorious for causing diarrhea, gas, or bloating. Things might go better if you were to change your diet so as to avoid these triggers.
.
https://www.aboutibs.org/signs-and-symptoms-main/symptom-diary-2.html

I've kind of just been keeping a mental note of the foods/beverages, but you're right. I should keep a food diary. It should be very easy since I don't snack on random things throughout the day, like I used to. Rather, it's more like, "oh, Tina, you forgot to eat lunch. You'd better go in the kitchen and eat something! What doesn't sound disgusting?" So today, it was fig bars for breakfast, I forgot what (if anything) I ate for lunch, corn on the cob for an early dinner, a cheese and green chile tamale for late dinner, then canned mandarin orange, and then a chocolate bar now, in bed. Probably not the best choices, but really the only things that didn't seem disgusting today. I'm going to read your link right now!

Hi TinaFish, I’m really sorry and I don’t mean to judge anyone’s food choices (I eat the weirdest sh*t during chemo - hello gluten free packet pancakes); but what you’ve described there would be a literal diarrhea-fest for me! The fig bars alone... then cheese and chocolate, with chilli, canned fruit... I’d never leave the bathroom!

Maybe throw in some mashed potatoes, toast (non-wheat when you’re on 5-FU), white or brown rice, pasta (esp. gnocchi), and chicken? These all slow me down a lot.

Good luck!
Rob

[TinaFish]

Have you considered keeping a detailed food-and-toilet log to see if there are any foods/beverages/medications that trigger your bowel problems?

It might be worth a try.

Among the foods/beverages/medications that you have mentioned consuming so far, there are several that are notorious for causing diarrhea, gas, or bloating. Things might go better if you were to change your diet so as to avoid these triggers.
.
https://www.aboutibs.org/signs-and-symptoms-main/symptom-diary-2.html

I've kind of just been keeping a mental note of the foods/beverages, but you're right. I should keep a food diary. It should be very easy since I don't snack on random things throughout the day, like I used to. Rather, it's more like, "oh, Tina, you forgot to eat lunch. You'd better go in the kitchen and eat something! What doesn't sound disgusting?" So today, it was fig bars for breakfast, I forgot what (if anything) I ate for lunch, corn on the cob for an early dinner, a cheese and green chile tamale for late dinner, then canned mandarin orange, and then a chocolate bar now, in bed. Probably not the best choices, but really the only things that didn't seem disgusting today. I'm going to read your link right now!

Hi TinaFish, I’m really sorry and I don’t mean to judge anyone’s food choices (I eat the weirdest sh*t during chemo - hello gluten free packet pancakes); but what you’ve described there would be a literal diarrhea-fest for me! The fig bars alone... then cheese and chocolate, with chilli, canned fruit... I’d never leave the bathroom!

Maybe throw in some mashed potatoes, toast (non-wheat when you’re on 5-FU), white or brown rice, pasta (esp. gnocchi), and chicken? These all slow me down a lot.

Good luck!
Rob

LMAO, no offense taken! I thought that canned fruit was one of the best choices as far as foods that are easy on the stomach... and, of course, the BRAT diet, but none of those things sound tolerable to me.

Thank you for those food tips! I will keep them in mind. I've also been thinking about getting dinner at KFC (Kentucky Fried Chicken), and I know that so much grease might be too much for my system, but I want the calories. Their cole slaw is to-die-for (maybe I can handle all that cabbage if I chew it really well) and their biscuits are 200 calories apiece.

Last night, my tenesmus kept me awake until 1:00AM and I had to wake up at 7:00AM to take my son to school. All I want to do right now is sleep. I finally took a Norco at 1:00AM last night and I think it just knocked me out regardless of the tenesmus.

I just don't understand how the tenesmus could be attributable to the tumor if I never had any tenesmus until after my first chemo. Right? I mean, it's mentioned all over the internet that tumors can cause tenesmus, but why would the tumor only successfully cause tenesmus once I'm aware of its existence??? There's no logic to that.

[Rock_Robster]

No worries at all TinaFish! Indeed I’m a big KFC fan too - but when I do it, I mainly stick to the chips and maybe some chicken strips. I find things with lots of batter (like popcorn chicken or the big burgers) I little trickier since my gallbladder moved out. Nandos is actually my personal favourite, but I don’t know if that’s a thing in the US? Big in the UK and Oz.

I totally get what you mean about symptoms. Sometimes I think it’s easy (and probably logical) for docs to write these off as cancer-caused. The week I was diagnosed I started getting terrible night sweats. This is of course a common symptom of cancer. But I had to remind everyone I literally didn’t have a sweat until I *knew* about the cancer, and it turned out to be anxiety-related. Chemo is another common one - lots of typical cancer symptoms didn’t start until I started chemo and actually my tumours started to reduce in size, so I chalk it up to chemo, not cancer. Anyway I guess my point is that you are closer to the patterns than all the doctors, and don’t ignore your instinct. It may save your life one day. That said, you *do* have cancer unfortunately so there will be a host of weird and bizarre size effects along the journey of evicting this thing, most of which won’t try to kill you.

As usual, best of luck.

Rob

[boxhill]

Tina, thanks for explaining, I understand your immodium rationale now. And it makes sense, although as you say, it's a balancing act with constipation! But it sounds like you have that and the bloating/gas under much better control.

I'm really happy that you are feeling so much better.

BTW, corn on the cob, chili....straight to the toilet for me, lol.

I must say I wish I had this loss of appetite thing that everyone else is plagued by. The one side-effect I would really like to have, but no.

[Rock_Robster]

PS: I think the canned fruits are a double-edged sword. They are relatively low in fibre and their fibre is soluble (esp compared with fresh fruits) so are often recommended for people with upset or sensitive stomachs. However they are also very high in fructose, which can be a diarrhea trigger for many. One good thing about them is they can help avoid dehydration through electrolyte loss (as they are high in sugar and potassium), but if they cause more diarrhea then they’re a false economy there. I know for me they go straight through me, but YMMV.

The best starting place for me is starchy complex carbohydrates - potatoes, breads, pastas and things like that. But always well-cooked (and no wheat-breads on chemo).

I discussed diarrhea with my surgeon yesterday (as I’m starting Folfoxiri next week and have an ileostomy), and his advice was:
1) Slow it down *first* with Imodium or similar
2) Replace the electrolytes with a concentrated drink like ORS or St Mark’s Solution (*not* water)
3) Bulk it out with well-cooked carbs and easy to digest fibre (including Metamucil if needed)
4) Slowly add things back in and see how you tolerate them

Hope this is of some minor help!

Rob