Diarrhea and bloating and gas, oh my!

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TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Diarrhea and bloating and gas, oh my!

Postby TinaFish » Wed Aug 21, 2019 8:27 pm

Rock_Robster wrote: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


Oh, Rob, I had horrible night sweats after my first chemo! We were having hot summer nights but I couldn't tolerate the ac or a fan - I would feel so cold from those things. I slept almost naked, and with the windows open. I was comfortable going to bed, until I woke up a few hours later in wetness! I was sweating every night until my second chemo! After that, it never happened again. So weird.

Another thing that happened repeatedly between my first and second chemo, and then never again? Fever. A very low-grade fever that ranged between 99 and 100. It would always come on around late afternoon/early evening, and it would last a few hours. My oncologist attributed it to the chemo being effective and my body fighting the cancer. Well then, why did it stop happening?

I don't really know what to think, but those two things were extremely uncomfortable and annoying, and I don't miss them!
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Diarrhea and bloating and gas, oh my!

Postby TinaFish » Wed Aug 21, 2019 9:04 pm

Rock_Robster wrote: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


I like that advice. Would Gatorade also fall under #2? Gatorade has been my go-to drink lately. It tastes ok at room temperature, it has calories and electrolytes, and the taste of plain water has become disgusting to me. I was never really into it, but now I dislike it even more. I luuuuuv me some Pepsi, but the carbonation seems to cause gas.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Rock_Robster
Posts: 288
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Diarrhea and bloating and gas, oh my!

Postby Rock_Robster » Wed Aug 21, 2019 9:23 pm

TinaFish wrote:
Rock_Robster wrote: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


I like that advice. Would Gatorade also fall under #2? Gatorade has been my go-to drink lately. It tastes ok at room temperature, it has calories and electrolytes, and the taste of plain water has become disgusting to me. I was never really into it, but now I dislike it even more. I luuuuuv me some Pepsi, but the carbonation seems to cause gas.

Gatorade is definitely better than water. The main issue is it’s very high in sugar (more than you need for rehydration), so it may contribute to your diarrhea. It is also relatively low in electrolytes.

Is hydralite or a similar product (or Oral Rehydration Salts) available from your pharmacy? It tastes similar to Gatorade but with way less sugar and more salt. Alternatively you can easily and cheaply mix up St Mark’s Solution - it’s 1 litre of water, with 6 teaspoons of glucose powder (or sugar), 1 teaspoon of salt and 0.5 teaspoons of sodium bicarbonate. Problem is it doesn’t taste so great, so you might need to add a little lemon or something, which is OK.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1apM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN+
08/19 - Missed liver spot
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Diarrhea and bloating and gas, oh my!

Postby TinaFish » Wed Aug 21, 2019 10:35 pm

Rock_Robster wrote:
Is hydralite or a similar product (or Oral Rehydration Salts) available from your pharmacy? It tastes similar to Gatorade but with way less sugar and more salt. Alternatively you can easily and cheaply mix up St Mark’s Solution - it’s 1 litre of water, with 6 teaspoons of glucose powder (or sugar), 1 teaspoon of salt and 0.5 teaspoons of sodium bicarbonate. Problem is it doesn’t taste so great, so you might need to add a little lemon or something, which is OK.


Wow, I am becoming so educated about diarrhea, lol! I'll look into that stuff. Now that I know that sugar contributes to diarrhea, I'm even more limited as far as what I can ingest for calories. One can only eat so much butter/oil/etc. before it becomes disgusting.

So far, for the past few days, it seems that the regimen I need to stay on in order to keep the diarrhea/tenesmus at bay is the following cocktail, taken three times a day (morning, noon, and night):


2 Imodium, 2mg each
1 Bentyl, 10mg
1 Lomotil 2.5-0.025 mg (I know that doesn't make sense. That's what's printed on the bottle.

Does that seem excessive? Any deviation from it in terms of an effort to take a smaller does (or no dose) of any of the meds results in tenesmus and diarrhea!

Sorry to be gross, but I actually had what felt like a huge "normal" poop tonight! In reality it was only about 5" long, but that's the most normal thing I've seen in months!

Maybe I still have another day or two for the Care Oncology meds to be totally out of me. Maybe I can reduce my dose after that.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Rock_Robster
Posts: 288
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Diarrhea and bloating and gas, oh my!

Postby Rock_Robster » Wed Aug 21, 2019 11:26 pm

To clarify, sugar doesn’t *always* cause diarrhea, but in excess it can for some - or worsen existing diarrhea. We do need to replace sugars when dehydrated.

In terms of Imodium that does not seem excessive, provided you need it of course. I’ve been told of people who take up 30 x 2mg doses per day - obviously that is an extreme case but it’s a very safe drug without long term effects.

I don’t know anything about the other drugs sorry.

Sounds like you’re getting closer to normal movements now though! Well done. Hope this continues to work for you.

Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1apM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN+
08/19 - Missed liver spot
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

boxhill
Posts: 336
Joined: Fri Apr 06, 2018 11:40 am

Re: Diarrhea and bloating and gas, oh my!

Postby boxhill » Thu Aug 22, 2019 8:07 pm

I've had the impression that the "canned fruit" in question should basically just be applesauce, preferable unsweetened. That was part of my post-surgical diet, and I used to take packs of it to chemo for a snack.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Diarrhea and bloating and gas, oh my!

Postby TinaFish » Thu Aug 22, 2019 10:34 pm

boxhill wrote:I've had the impression that the "canned fruit" in question should basically just be applesauce, preferable unsweetened. That was part of my post-surgical diet, and I used to take packs of it to chemo for a snack.


Yeah, I have to start eating more applesauce. My mother, who was from Germany (she passed away last October), used to make me a dish called Kaiser Schmarren. It's basically a pancake made with whipped egg whites and raisins in it, and then instead of putting syrup on it, you put applesauce. It's absolutely delicious. I had it for dinner a couple of weeks ago. I highly recommend it... assuming it's not going to cause digestion problems for anyone. I'm still so new to learning all of that stuff ;)
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Diarrhea and bloating and gas, oh my!

Postby TinaFish » Thu Aug 22, 2019 10:43 pm

Sorry to keep updating everyone with the saga of my digestive system (I know you're all riveted), but this is really weird:

I woke up this morning feeling fine. I had a normal (albeit small) poop. Spent all day feeling normal! Had a normal (albeit small) poop tonight! And I did not take ANY Lomotil, Bentyl, or Imodium today! I've only been taking those things when I've felt tenesmus, and I didn't feel it at all today! I'm so accustomed to tenesmus now that when I had my "normal" poops today, I thought it was tenesmus... until real poop actually came out.

I did take a Buscopan in the late morning, only because my stomach was feeling slightly weird. I think if I had to complain about anything today, I'd say that I may have been slightly on the constipated side.

Going from taking the cocktail three times a day to not taking it at all, I have no idea what to expect when tomorrow comes. Tomorrow is my last day of Capecitabine, so maybe my body can just have a rest from diarrhea-causing irritants until I have chemo on Wednesday.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Diarrhea and bloating and gas, oh my!

Postby TinaFish » Fri Aug 23, 2019 9:10 pm

Today was identical to yesterday, except I didn't take aby Buscopan today. 3 or 4 poops today, all of them normal, small, and borderline hard. I'm slightly constipated. Still. This is just so weird! First, I have to take these medications so frequently because they won't kick in, and then when they DO kick in, they kick HARD! Seriously, I'm so annoyed. Maybe tomorrow will normalize.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Diarrhea and bloating and gas, oh my!

Postby TinaFish » Sat Aug 24, 2019 10:30 pm

This morning was crazy. From 8:30 to about noon, I sat on the toilet at least 20 times, with a strong urge to poop, and a significant amount of poop came out each time! I was dumbfounded that so much poop could be in the human body! Eventually I took Buscopan. We were expecting guests at 1:00 because we had my daughter's birthday party today. I didn't want to be on the toilet throughout the party!

The Buscopan worked well, but I started having more pooping urges around 6:00. I took a Bentyl. No dice. At 8:00 I took a Lomotil and two Imodium.

Clearly, I can't just load up on these meds whenever I have tenesmus. That just causes constipation down the road. It seems like I will have to bear through the tenesmus until the meds work. I have to take them less frequently. Stupid me, I shouldn't have let so much time pass without taking any of them. I guess I was just hopeful that once the constipation was over, I could normalize and not have to take anything.

Just took more Buscopan. God I can't take this! It got so much worse, so quickly!!
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Jacques
Posts: 497
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Reminder: August 26 scan appointment

Postby Jacques » Sun Aug 25, 2019 10:51 am

TinaFish wrote:... Finally ...she scheduled me for a scan on the 26th...

For your scan on August 26th, what I would suggest is for you to bring a copy of your June 7th scan report along with its CD-rom so that the radiologist can make a technical comparison between your June 7th scan and the current one before writing his/her report.

Edit:
I would also suggest that you ask the scan center how you can get a duplicate copy of your August 26th scan report and the scan's CD-rom. This is for purposes of getting a second opinion if you ever want to do that. At my facility, they will print off an extra copy of the scan report at no charge and create a duplicate CD for about $5.

There are many radiology departments around that will do CT scan second opinions for a fee, but they need a copy of the original report and a copy of the original CD-rom. Here's one example:
Radiology Consultation Service
Our Radiology Consultation Service provides official reading for exams performed at facilities outside UCSF. To take advantage of this service, your medical provider must complete a requisition form and submit the form with your CD or X-Ray films to the UCSF Radiology Library.
Reference:,https://radiology.ucsf.edu/patient-care/for-patients/radiology-library-patients

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Reminder: August 26 scan appointment

Postby TinaFish » Wed Aug 28, 2019 11:33 pm

Jacques wrote:
TinaFish wrote:... Finally ...she scheduled me for a scan on the 26th...

For your scan on August 26th, what I would suggest is for you to bring a copy of your June 7th scan report along with its CD-rom so that the radiologist can make a technical comparison between your June 7th scan and the current one before writing his/her report.

Edit:
I would also suggest that you ask the scan center how you can get a duplicate copy of your August 26th scan report and the scan's CD-rom. This is for purposes of getting a second opinion if you ever want to do that. At my facility, they will print off an extra copy of the scan report at no charge and create a duplicate CD for about $5.

There are many radiology departments around that will do CT scan second opinions for a fee, but they need a copy of the original report and a copy of the original CD-rom. Here's one example:
Radiology Consultation Service
Our Radiology Consultation Service provides official reading for exams performed at facilities outside UCSF. To take advantage of this service, your medical provider must complete a requisition form and submit the form with your CD or X-Ray films to the UCSF Radiology Library.
Reference:,https://radiology.ucsf.edu/patient-care/for-patients/radiology-library-patients


Thank you for that advice! I actually *can* implement it, because guess what?

I went in two days ago for my scan. Sitting in the waiting room FOREVER, finally the dim-witted receptionist starts calling, "Kristine? Kristine?" My name is Kristina. Kris-ti-na. Three syllables. If someone can't acknowledge the "a" at the end when it's written on paper right in front of their face, then I just can't respond to that idiocy. Finally, she got it right. I came to the front desk.

She said, "We've been calling you all morning. Our machine is broken. We can't do your scan."

Are you kidding me?? She showed me the number she had been calling. They were calling a number that doesn't even belong to me! I'm like, "I have no idea what that number is!" And now they've made me wait in their waiting room, only to be told that the f****** machine is broken? I paid a sitter to care for my daughter, you f******* illiterate idiot!!

So now the illiterate idiot is going to call me, "Kristine," on my CORRECT phone number once the machine is fixed. OMFG.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.


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