Diarrhea and bloating and gas, oh my!

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

Diarrhea and bloating and gas, oh my!

Postby TinaFish » Tue Aug 06, 2019 12:15 am

Sometimes, when I'm having a day when I feel decent physically, I like to just pretend that I'm healthy. I just take a day off from the horrible, scary thoughts and just pretend that there's nothing wrong in my life. I play and laugh with my kids, and I savor every moment of it. Today was one of those days... until I ate a bean burrito for dinner! OMG, 30 minutes later, my stomach was in so much pain that I literally gagged myself to get it out of my body. Sorry if that's TMI. I took three Beano pills before eating the burrito! You'd think that would have helped!

I just want to know if this is normal! Prior to my diagnosis (even while I had cancer, but before I knew that I had it), I could eat beans all day long without a problem. I could eat anything I wanted! Never had any problems!

But, ever since going through that first round of chemo on June 16, the diarrhea has been INCESSANT. Some days are better than others, but I ALWAYS have diarrhea, no matter how much Imodium I take. Oncologist prescribed Lomotil to me and I've been taking it since yesterday. It seems to be helping me have more "normal" poop, but it's like normal poop comes out first, and then there's more diarrhea. The worse my diarrhea is, the worse my tenesmus is.

I spend most days hoping/trying to pass gas. It gives me temporary relief.

I have been off of capecitabine for exactly a week now, so wouldn't you think that my body would have returned by now to its pre-chemo, diarrhea-free state?

My question is: is this normal? I go from feeling great pre-diagnosis to feeling horrible after diagnosis? Is this much diarrhea/bloating/gas/stomach pain/intolerance to certain foods NORMAL for someone who has only gone through two rounds of oxaliplatin and 5FU?

I can't blame this misery on anything other than the chemo, but I just can't imagine that it's normal to have unrelenting diarrhea at this point. I keep myself well-hydrated and I'm doing alright, but I'm on the toilet so often, I feel like I really can't leave the house for any significant length of time.
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: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Diarrhea and bloating and gas, oh my!

Postby Rock_Robster » Tue Aug 06, 2019 1:10 am

Hi TinaFish,

Your description is all very familiar. The day before I was diagnosed I had almost zero symptoms, I was going to the gym regularly, travelling 2-3 times per week (short haul) and monthly (long haul), feeling fine. Within a month of diagnosis I’d lost 5kg (12lbs) through anxiety, and had nausea, diarrhea, fatigue, neutropenia and neuropathy from FOLFOX, plus a DVT! I just have to remind myself that I was fine literally the day before I knew about all this, so it must be from the treatment rather than the cancer!

I’m sorry I can’t help much more on the diarrhea side, except for the obvious things (Imodium, lomotil, oral rehydration salts), and for the love of GOD avoid beans!!

Cheers
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
pT3pN1aM1a; 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
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

Re: Diarrhea and bloating and gas, oh my!

Postby NHMike » Tue Aug 06, 2019 4:19 am

I think that I had alternating diarrhea and constipation while one chemo and radiation.

I do know how you feel though.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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

Re: Diarrhea and bloating and gas, oh my!

Postby TinaFish » Tue Aug 06, 2019 10:22 am

Thanks, guys. What's a DVT?
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.

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

Re: Diarrhea and bloating and gas, oh my!

Postby NHMike » Tue Aug 06, 2019 10:26 am

TinaFish wrote:Thanks, guys. What's a DVT?


Deep vein thrombosis, or DVT, is a blood clot that forms in a vein deep in the body. Most deep vein clots occur in the lower leg or thigh. If the vein swells, the condition is called thrombophlebitis. A deep vein thrombosis can break loose and cause a serious problem in the lung, called a pulmonary embolism.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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

Re: Diarrhea and bloating and gas, oh my!

Postby TinaFish » Tue Aug 06, 2019 11:07 pm

NHMike wrote:
TinaFish wrote:Thanks, guys. What's a DVT?


Deep vein thrombosis, or DVT, is a blood clot that forms in a vein deep in the body. Most deep vein clots occur in the lower leg or thigh. If the vein swells, the condition is called thrombophlebitis. A deep vein thrombosis can break loose and cause a serious problem in the lung, called a pulmonary embolism.


Wow, Rob! Your side effects were much worse than mine. I feel like a whiner now!

So the obvious question, everyone, is how long does a person need to be off of chemo before the side effects stop?
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: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Diarrhea and bloating and gas, oh my!

Postby Rock_Robster » Tue Aug 06, 2019 11:34 pm

Well I had a lot of side effects but all relatively minor in retrospect, grade 1-2 max. Also my first round was my worst - I think my body was in some kind of shock. After that it handled it much better, and I also got better at managing it (love Emend and Ativan!).

The DVT was a real black swan. My port catheter tip spontaneously migrated to my opposing subclavian vein (rare, but it happens apparently), and I got a load of FOLFOX into the shoulder, which then clotted immediately. I can’t recommend that. Good thing about DVTs is they hurt like hell so it’s hard to ignore. After both my surgeon and onc told me it’s nothing, my GP ordered an ultrasound and boom, 4 inch clot.

Port out, start clexane, clot resolved in 2 months and port replaced. No PE, very thankfully. From then on I learned to ALWAYS listen to my body and never give up on a concern if I’m not comfortable.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; 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
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

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

Re: Diarrhea and bloating and gas, oh my!

Postby TinaFish » Tue Aug 06, 2019 11:45 pm

I'm always so weirded out by my port. I worry that it will move around when I sleep on it. I feel like a cyborg with this thing in me, and it hurts when my kids hug me too hard, and it itches sometimes (why? I have no idea. The scar is two months old now), and I just don't fully trust it.

And that's another thing! This port has a tip, you mentioned! The nurses showed me the port before they inserted it in my chest, but all I remember seeing was a round silver disc that looked like a rubber doorbell. After they implanted it in me, I noticed TWO scars (the higher scar at my neck was super tiny), and my blond hair was stained by my blood. I had felt some wetness during the procedure, but didn't know it was my blood! I'm not really understanding the mechanism of this port - is it feeding the chemo meds into my artery?

And please, what is a PE?
Last edited by TinaFish on Tue Aug 06, 2019 11:58 pm, edited 1 time in total.
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: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Diarrhea and bloating and gas, oh my!

Postby Rock_Robster » Tue Aug 06, 2019 11:51 pm

A Pulmonary Embolism, which is what happens if a DVT breaks off and travels back through the heart to the lungs, where it blocks off a blood vessel. These have a pretty high mortality rate, and can really complicate things. A good reason to pick up and treat any potential clot early!

I understand re the port - mine freaked me out for about a month, then I forgot about it. After an open liver resection scar, robotic ULAR scars and an ileostomy, my abdomen looks like I held a grenade too long anyway, so I hardly notice the port! My main advice would be - don’t touch it, don’t play with it, don’t even look at. Just pretend it isn’t there and your brain will just edit it out, like it does for the end of your nose :)
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; 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
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

User avatar
Jacques
Posts: 566
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Diarrhea and bloating and gas, oh my!

Postby Jacques » Tue Aug 06, 2019 11:57 pm

TinaFish wrote:...So the obvious question, everyone, is how long does a person need to be off of chemo before the side effects stop?

I have no idea. I have been off chemo now for over 6 years, and I still have to watch what I eat very closely. I have a long list of "forbidden" foods that I don't eat anymore, including anything that contains gluten.

For bloating and gas, here is an interesting article:

13 Foods That Cause Bloating (and What to Eat Instead)
https://www.healthline.com/nutrition/13-foods-that-cause-bloating

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

Re: Diarrhea and bloating and gas, oh my!

Postby TinaFish » Wed Aug 07, 2019 12:00 am

Jacques wrote:
TinaFish wrote:...So the obvious question, everyone, is how long does a person need to be off of chemo before the side effects stop?

I have no idea. I have been off chemo now for over 6 years, and I still have to watch what I eat very closely. I have a long list of "forbidden" foods that I don't eat anymore, including anything that contains gluten.

For bloating and gas, here is an interesting article:

13 Foods That Cause Bloating (and What to Eat Instead)
https://www.healthline.com/nutrition/13-foods-that-cause-bloating


Wow. Just wow. Six years later. I'm so sorry. That sucks.
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.

User avatar
Jacques
Posts: 566
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Diarrhea and bloating and gas, oh my!

Postby Jacques » Wed Aug 07, 2019 3:48 am

Rock_Robster wrote:(... love Emend and Ativan!)...

Rob -

I noticed that you mentioned Ativan above. I just wanted to say that Ativan is a benzodiazepine and should be taken with caution, only for short periods of time. See the links in the following post:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61855&p=490487#p490487

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Diarrhea and bloating and gas, oh my!

Postby Rock_Robster » Wed Aug 07, 2019 3:59 am

Absolutely Jacques, thanks for the thought. I only take a small dose (0.5 mg or so) for 2-3 nights after the steroids (dexamethasone) to help with sleep. I’ve also used it for a couple of nights after surgery, as I don’t sleep well in hospitals.

A benzo addiction is the last thing I need on top of this :)
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; 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
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

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

Re: Diarrhea and bloating and gas, oh my!

Postby TinaFish » Thu Aug 08, 2019 9:32 am

I had my 3rd round of chemo (oxaliplatin) yesterday. My oncologist reduced the dose by 30% this time, because the previous time, I had horrific acute side effects. This time, I'm feeling a lot better. No diarrhea (but I proactively took lomotil and Imodium), eyes stinging when they tear up, sensitivity with cold drinks, although the sensitivity seems much less than what I previously experienced on day one), and voice/throat feels weird when I speak/yell/drink fluids. Slight fatigue yesterday evening, and pain in my jaw when I chew. That's it. The previous time I had chemo, I had horrible muscle pain on day 3. My calves were the worst. I couldn't even walk. Tomorrow will be day 3 for this round, so we'll see what happens.
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.

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

Re: Diarrhea and bloating and gas, oh my!

Postby NHMike » Thu Aug 08, 2019 9:39 am

TinaFish wrote:I had my 3rd round of chemo (oxaliplatin) yesterday. My oncologist reduced the dose by 30% this time, because the previous time, I had horrific acute side effects. This time, I'm feeling a lot better. No diarrhea (but I proactively took lomotil and Imodium), eyes stinging when they tear up, sensitivity with cold drinks, although the sensitivity seems much less than what I previously experienced on day one), and voice/throat feels weird when I speak/yell/drink fluids. Slight fatigue yesterday evening, and pain in my jaw when I chew. That's it. The previous time I had chemo, I had horrible muscle pain on day 3. My calves were the worst. I couldn't even walk. Tomorrow will be day 3 for this round, so we'll see what happens.


These are normal side-effects. You might be having cramps and taking in more electrolytes may help there if it continues. My oncologist often added Magnesium to the IV because of the electrolyte losses.

My first Oxaliplatin infusion was in December 2017 in New Hampshire. The temperatures was in the mid 20s, it was windy and there was a blizzard outside. My hands were painful driving home because the steering wheel was very cold. So it can be pretty rough in colder climates during the winter. It's tough stuff but you get through it.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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