LAR Syndrome and Water

Please feel free to read, share your thoughts, your stories and connect with others!
Gravelyguy
Posts: 308
Joined: Thu Jul 05, 2018 6:03 pm

LAR Syndrome and Water

Postby Gravelyguy » Fri Sep 27, 2019 6:09 am

Hi Fellow LARS-ites,

There has been quite a bit of discussion about lars on here lately and it has got me thinking and reflecting some so I thought I would ramble a little and see if we can do a little experiment.

Many of us are trying different supplements to help out with our bowel issues. There seems to be quite a variety of responses that we each have to them. I started my routine last summer and it really helped me a lot but one thing that I have discovered that gets me from "pretty ok" to feeling quite "normal" is water. If I don’t get enough water I tend to have more gas and some minor clustering in the evening. If I get enough water I have minimal gas, I am still a guy after all, and no clustering.

I am wondering if it is just me or could we all benefit from getting adequate water intake? So if you are still reading, here is my proposal. I would like everyone who is a ways out from takedown surgery to stay on their routine if they have one but try to consistently take in enough water. The goal would be to share your experiences here.

What is enough water? In the States it is half your body weight in ounces. So if you weigh 100 lbs. you need to drink at least 50 oz. if you don’t do customary units you would have to do some converting but for this example it would be if you weigh 45 kg you would need about 1.5 liters.

My water routine is filling a 40 oz. insulated water bottle right away in the morning and try to drink it before 9. I then refill it and try to get the second one down by around 2. Lately I have had enough time to drink a third. I weigh around 175 lbs. so am over the “minimum”.

I am speculating but I think it helps the GI track keep things moving and with that much water in me I tend to be less hungry so I don’t have to eat as much although my weight has been steady so I could be wrong too!

Anyway, it would be very interesting to see if water would help others like it has helped me.

Dave
Last edited by Gravelyguy on Fri Sep 27, 2019 2:55 pm, edited 2 times in total.
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

ams5796
Posts: 2297
Joined: Fri Feb 06, 2009 10:07 am

Re: LAR Syndrome and Water

Postby ams5796 » Fri Sep 27, 2019 12:50 pm

I'm in. I like this idea. I need a way to be accountable.
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: LAR Syndrome and Water

Postby teachpdx » Fri Sep 27, 2019 2:14 pm

I like water and drink as much as I can, but there can be issues with water around eating. The more water I drink around a meal the waterier my poop becomes and that's no good because it can cause clustering or looser stool which is another problem.

So I try and drink my water inbetween meals. Soup can be a problem for me as well as shakes - all because my body sees them as food and I don't have as much of a colon to absorb out the liquid.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Gravelyguy
Posts: 308
Joined: Thu Jul 05, 2018 6:03 pm

Re: LAR Syndrome and Water

Postby Gravelyguy » Fri Sep 27, 2019 2:38 pm

ams5796 wrote:I'm in. I like this idea. I need a way to be accountable.


Awesome! Keep us posted how much water you are taking in and how it impacts things. When I have a bad water day it takes a couple of days of good water days to get back on track.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

Gravelyguy
Posts: 308
Joined: Thu Jul 05, 2018 6:03 pm

Re: LAR Syndrome and Water

Postby Gravelyguy » Fri Sep 27, 2019 2:49 pm

teachpdx wrote:I like water and drink as much as I can, but there can be issues with water around eating. The more water I drink around a meal the waterier my poop becomes and that's no good because it can cause clustering or looser stool which is another problem.

So I try and drink my water inbetween meals. Soup can be a problem for me as well as shakes - all because my body sees them as food and I don't have as much of a colon to absorb out the liquid.


Thanks teach,

Sounds like you have your body figured out. In thinking about my drinking, I guess I do most of my drinking between meals too. So maybe that is another thing we need to keep track of is when we are drinking our water.

I would also add to anyone who is overwhelmed by the amount of water you need to drink, start somewhere and work your way up. I have never been a tea or coffee guy and soda was never a big thing for me and now the carbonation does nothing good for me so water is my go to.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

User avatar
Rob in PA
Posts: 2004
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: LAR Syndrome and Water

Postby Rob in PA » Fri Sep 27, 2019 3:22 pm

I like my water, but never really considered the positive or negative impact it had on my clustering. I'll try and pay a little more attention and see what my results are.
I hate carbonated stuff so that's not really a factor for me.

Good idea.
Thanks
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: LAR Syndrome and Water

Postby NHMike » Fri Sep 27, 2019 6:08 pm

For me, fluids generate gas which helps to push things out. But I don't necessarily know that it decreases clustering. I can drink fluids throughout the day and I still get clustering. Things just come out sooner than they would without as much liquid. Spritzer seems to increase the speed with which things come out as that generates even more gas. Also, coffee with cream speeds things up.

One aspect for me is that I lost the ability to sense thirst after the reversal so I keep a Notes table to keep track of fluids with a target of 64 ounces per day. I usually go way over that. I use the same table to track supplements and a few other things.
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

Gravelyguy
Posts: 308
Joined: Thu Jul 05, 2018 6:03 pm

Re: LAR Syndrome and Water

Postby Gravelyguy » Sat Sep 28, 2019 5:25 am

Rob in PA wrote:I like my water, but never really considered the positive or negative impact it had on my clustering. I'll try and pay a little more attention and see what my results are.
I hate carbonated stuff so that's not really a factor for me.

Good idea.
Thanks
Rob


Thanks Rob!

It will be interesting to see what impact if any it does. There are a few times, particularly when eating Mexican, that I miss drinking soda but not many.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

Gravelyguy
Posts: 308
Joined: Thu Jul 05, 2018 6:03 pm

Re: LAR Syndrome and Water

Postby Gravelyguy » Sat Sep 28, 2019 5:30 am

NHMike wrote:For me, fluids generate gas which helps to push things out. But I don't necessarily know that it decreases clustering. I can drink fluids throughout the day and I still get clustering. Things just come out sooner than they would without as much liquid. Spritzer seems to increase the speed with which things come out as that generates even more gas. Also, coffee with cream speeds things up.

One aspect for me is that I lost the ability to sense thirst after the reversal so I keep a Notes table to keep track of fluids with a target of 64 ounces per day. I usually go way over that. I use the same table to track supplements and a few other things.


Hi Mike,

That is strange that you no longer can sense when you are thirsty. You have really been through the wringer. As we have talked about before this is such a strange syndrome in that what works for someone may not help another. I figured we all need water and maybe by having many people experimenting with the same thing “water” we can find something that the majority can use to help with the symptoms!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

Gravelyguy
Posts: 308
Joined: Thu Jul 05, 2018 6:03 pm

Re: LAR Syndrome and Water

Postby Gravelyguy » Sat Sep 28, 2019 5:35 am

Alright he goes the first data point!

Yesterday I had 3 40 oz bottles plus a little more that I took to down my supplements. So I am going to call it 130 oz total. I did not drink any water with meals.

Because I have been doing this for a while, I will report my “output” as well. I went twice in the early morning within 10 minutes of each other. I think I was rushing to get to school so didn’t fully evacuate. I peed quite a few times throughout the day but other than that that was it.

It will be a great test today as we will be at a cross country meet all day. This meet will have at least 3000 runners and no indoor plumbing but it will feature one long line of port a potties!
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

Gravelyguy
Posts: 308
Joined: Thu Jul 05, 2018 6:03 pm

Re: LAR Syndrome and Water

Postby Gravelyguy » Sat Sep 28, 2019 5:58 am

It might be helpful for people to know what kind of surgery and how low your resection was. That seems to play some role in this lars stuff.

For me I had a coloanal anastomoses so end to end without a pouch formed or anything. The tumor was, before chemo and radiation, a little under 1cm for the verge so I am rectum free.
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: LAR Syndrome and Water

Postby NHMike » Sat Sep 28, 2019 6:13 am

If you drink a lot of water, you need to maintain your electrolytes. There are cases of marathon runners getting heart attacks by running, drinking a lot of water and then dying. The water can flush electrolytes.
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

Gravelyguy
Posts: 308
Joined: Thu Jul 05, 2018 6:03 pm

Re: LAR Syndrome and Water

Postby Gravelyguy » Sat Sep 28, 2019 7:21 am

NHMike wrote:If you drink a lot of water, you need to maintain your electrolytes. There are cases of marathon runners getting heart attacks by running, drinking a lot of water and then dying. The water can flush electrolytes.



Very good point Mike,

I did over do it yesterday. I will be having some electrolyte replacement in some of my water today. I get going in class and talk and drink and talk and drink and forget how much I have had!
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

Rock_Robster
Posts: 507
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: LAR Syndrome and Water

Postby Rock_Robster » Sat Sep 28, 2019 7:44 am

Gravelyguy wrote:
NHMike wrote:If you drink a lot of water, you need to maintain your electrolytes. There are cases of marathon runners getting heart attacks by running, drinking a lot of water and then dying. The water can flush electrolytes.



Very good point Mike,

I did over do it yesterday. I will be having some electrolyte replacement in some of my water today. I get going in class and talk and drink and talk and drink and forget how much I have had!

Quite right guys. My surgeon’s advice was that water is no good if you’re already dehydrated, as it will further stuff up your osmotic balance and just draw more fluids out of you. So electrolyte drinks to start with, then OK to switch to plain water if you’re well-hydrated (or consuming with food which normally also contains salts and sugars).
38M Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic VMAT radiation; complete met. response
07/19 Robot ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect #2
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope

Gravelyguy
Posts: 308
Joined: Thu Jul 05, 2018 6:03 pm

Re: LAR Syndrome and Water

Postby Gravelyguy » Sun Sep 29, 2019 7:48 am

Yesterday I drank about 80 oz of water some with an electrolyte replacer with it. I am Ali had a 16 oz Gatorade at the cross country meet.

I went twice in the morning about an hour apart and then twice in the evening about 5 minutes apart. Great day for a cross country meet and the kids ran well!
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: teacher49 and 34 guests