Diarrhoea only at Night

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Siti
Posts: 105
Joined: Thu Aug 01, 2019 10:58 am

Diarrhoea only at Night

Postby Siti » Tue Nov 19, 2019 4:14 am

Hey everyone,

I know diarrhoea have been discussed to great lengths here but I thought I’d ask again because my husband’s pattern seem very strange. The diarrhoea only comes at night, severe and it’s interrupting his sleep till the point they have to now temporarily stop oral chemo (capecitabine) so that his bowels can recover.

He’s tried taking Imodium, Buscopan and Mebeverine. It helps with pain and reduced frequency but when night falls, it doesn’t work.

Our nurse told us not to take any probiotics when we suggested to to her. Our oncologist said it doesn’t help cause chemo is going to kill it anyway.

Any other tips? Thanks so much!

Siti
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

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

Re: Diarrhoea only at Night

Postby NHMike » Tue Nov 19, 2019 6:30 am

If Immodium doesn't fix it, then it is really tough indeed.

There have been nights with LARS where I woke up every two hours to go to the bathroom (I set an alarm on a phone or tablet to wake myself up). Sometimes it's a lot more frequent than that (I wake up without an alarm). Is this only after the infusion?

I always recommend potatoes or sweet potatoes as those soak up a lot of water in the intestines. That may help.

How about only eating in the morning? Would that make things better at night?

Sorry he has to go through this. The treatment is indeed rough.
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

Siti
Posts: 105
Joined: Thu Aug 01, 2019 10:58 am

Re: Diarrhoea only at Night

Postby Siti » Tue Nov 19, 2019 10:07 am

NHMike wrote: How about only eating in the morning? Would that make things better at night?


That’s a good idea. Maybe we should stop solids at night and just have clear broth. I’ll try that for him tonight. He had soup and sweet potato last night and was up all night with bad diarrhoea. It really doesn’t matter what he eats, the trigger is at night.

Strangely during the infusion week — he seems to have the best stool then (maybe cause Oxi suppose to cause constipation?) :lol:
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

AlexandraZ
Posts: 109
Joined: Fri Aug 23, 2019 8:25 am

Re: Diarrhoea only at Night

Postby AlexandraZ » Tue Nov 19, 2019 12:39 pm

I don't have any advice, just wanted to tell you I've been thinking about you and sending you lots of positive thoughts for a continued great response!

Jesper had some diarrhea recently but he's not on chemo at the moment. He takes probiotics and I think it's getting better. But I guess probiotics don't help when you're on chemo.

I hope the clear broth idea works! Sounds smart.

Hugs!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Siti
Posts: 105
Joined: Thu Aug 01, 2019 10:58 am

Re: Diarrhoea only at Night

Postby Siti » Tue Nov 19, 2019 4:53 pm

AlexandraZ wrote:I don't have any advice, just wanted to tell you I've been thinking about you and sending you lots of positive thoughts for a continued great response!

Jesper had some diarrhea recently but he's not on chemo at the moment. He takes probiotics and I think it's getting better. But I guess probiotics don't help when you're on chemo.

I hope the clear broth idea works! Sounds smart.

Hugs!


Thanks Alexandra! Really appreciate your support and likewise, I think about you and Jesper almost every day!
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

Vana3
Posts: 7
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: Diarrhoea only at Night

Postby Vana3 » Wed Nov 20, 2019 2:33 pm

I have been doing chia seed “porridge’s” and that helps me combat the bad diarrhea. I used to avoid chai seeds before because it would cause constipation then a few weeks ago diarrhea was so bad it occurred to me to try the chia seeds and it has been helping...
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive + td
1 cm omental deposit (removed during surgery)
LVI present
negative for Lynch
prior to surgery CEA level 5, post surgery 4.2
MSS
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver, peri aortic LN suspicious
9/04 second round of folfox with Avastin being added on 9/18 (third treatment)
Still waiting for Tumor Biopsy

Siti
Posts: 105
Joined: Thu Aug 01, 2019 10:58 am

Re: Diarrhoea only at Night

Postby Siti » Wed Nov 20, 2019 6:02 pm

Vana3 wrote:I have been doing chia seed “porridge’s” and that helps me combat the bad diarrhea. I used to avoid chai seeds before because it would cause constipation then a few weeks ago diarrhea was so bad it occurred to me to try the chia seeds and it has been helping...


I just read your signature, I am so sorry you’re going through this. I really do hope we’ll find a cure soon!

Thanks for the tip on chia seeds, I never heard of that remedy before. Will certainly give it a go :)
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

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

Re: Diarrhoea only at Night

Postby Rock_Robster » Thu Nov 21, 2019 5:33 am

Siti wrote:
Vana3 wrote:I have been doing chia seed “porridge’s” and that helps me combat the bad diarrhea. I used to avoid chai seeds before because it would cause constipation then a few weeks ago diarrhea was so bad it occurred to me to try the chia seeds and it has been helping...


I just read your signature, I am so sorry you’re going through this. I really do hope we’ll find a cure soon!

Thanks for the tip on chia seeds, I never heard of that remedy before. Will certainly give it a go :)

Chia is great! The seeds actually absorb water and become like a gel as they move through your digestive system, helping regulate stool formation and potentially relieve both diarrhea and constipation. They’re also super calorie-dense too, so handy if you have trouble retaining/gaining weight. Just ease into them a bit as you don’t want to go too hard too fast... https://www.verywellhealth.com/can-chia ... on-1944829
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

Siti
Posts: 105
Joined: Thu Aug 01, 2019 10:58 am

Re: Diarrhoea only at Night

Postby Siti » Thu Nov 21, 2019 9:11 am

Rock_Robster wrote:
Siti wrote:
Vana3 wrote:I have been doing chia seed “porridge’s” and that helps me combat the bad diarrhea. I used to avoid chai seeds before because it would cause constipation then a few weeks ago diarrhea was so bad it occurred to me to try the chia seeds and it has been helping...


I just read your signature, I am so sorry you’re going through this. I really do hope we’ll find a cure soon!

Thanks for the tip on chia seeds, I never heard of that remedy before. Will certainly give it a go :)

Chia is great! The seeds actually absorb water and become like a gel as they move through your digestive system, helping regulate stool formation and potentially relieve both diarrhea and constipation. They’re also super calorie-dense too, so handy if you have trouble retaining/gaining weight. Just ease into them a bit as you don’t want to go too hard too fast... https://www.verywellhealth.com/can-chia ... on-1944829


Thanks Rob :)) I just made some chia seeds pudding. Let’s hope it’ll work, or at least help a little.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

boxhill
Posts: 405
Joined: Fri Apr 06, 2018 11:40 am

Re: Diarrhoea only at Night

Postby boxhill » Thu Nov 21, 2019 9:32 am

Something else that helps regulate stools is psyllium. You can buy a jar of plain psyllium husk and just have it in a glass of water.
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

Vana3
Posts: 7
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: Diarrhoea only at Night

Postby Vana3 » Thu Nov 21, 2019 10:15 am

Thank you Siti, I wish none of us were going thru this...

I am hoping that the chia helps for you guys!
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive + td
1 cm omental deposit (removed during surgery)
LVI present
negative for Lynch
prior to surgery CEA level 5, post surgery 4.2
MSS
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver, peri aortic LN suspicious
9/04 second round of folfox with Avastin being added on 9/18 (third treatment)
Still waiting for Tumor Biopsy

Siti
Posts: 105
Joined: Thu Aug 01, 2019 10:58 am

Re: Diarrhoea only at Night

Postby Siti » Thu Nov 21, 2019 2:55 pm

boxhill wrote:Something else that helps regulate stools is psyllium. You can buy a jar of plain psyllium husk and just have it in a glass of water.


Thank you! I’ll try to buy some soon. Does it taste awful? My husband is already a fussy eater before diagnosis and he’s even worse now :/
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

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

Re: Diarrhoea only at Night

Postby Rock_Robster » Thu Nov 21, 2019 7:45 pm

Siti wrote:
boxhill wrote:Something else that helps regulate stools is psyllium. You can buy a jar of plain psyllium husk and just have it in a glass of water.


Thank you! I’ll try to buy some soon. Does it taste awful? My husband is already a fussy eater before diagnosis and he’s even worse now :/

Eh, they don’t taste like much by themselves to be honest, but not great and I wouldn’t eat them dry. I usually add a tablespoon or two to things that already taste interesting - smoothies, muesli, porridge, yoghurt etc., on a salad,
or add to the mix if you’re making things like muffins or slices.

edit: sorry this is in relation to chia seeds; I replied to the wrong post.
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

Siti
Posts: 105
Joined: Thu Aug 01, 2019 10:58 am

Re: Diarrhoea only at Night

Postby Siti » Fri Nov 22, 2019 12:46 pm

Rock_Robster wrote:edit: sorry this is in relation to chia seeds; I replied to the wrong post.


No worries Rob! Thanks for the tip :)
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

AlexandraZ
Posts: 109
Joined: Fri Aug 23, 2019 8:25 am

Re: Diarrhoea only at Night

Postby AlexandraZ » Fri Nov 22, 2019 5:37 pm

Is it getting any better Siti?
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!


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