No-Joe Miracle

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Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

No-Joe Miracle

Postby Badass » Mon May 06, 2013 8:50 am

Hi,
I posted this news on the reversal log thread but I thought I would also make a thread here because I find this so amazing and thought it could help others. Also wondered if anyone has an explanation. Since stopping my single morning cup of coffee, all of my frequency, clustering and just plain uncomfortable feeling problems have come to a grinding halt. Even clusters in the evening have stopped (over 12 hours after the morning cup). I have gone from 12-20 or more BMs a day with 0- 2 clustering sessions a day (some brief, some for hours) to just plain 0-2 bowel movements a day just like normal with no discomfort in between. Actually, I am a little constipated without my coffee boost but added some prunes with no problems. Up until I stopped coffee, I couldn't look at a prune without loose clusters kicking in.

I am drinking tea (0-3 cups a day) and have no prob so it is not the caffeine.

I am pinching myself this is so amazing. I have been eating EVERYTHING, hiking and biking without a care. This is incredible. Seems impossible-- change occurred the day I stopped coffee.

I have been drinking a lot of kefir--not sure if that is helping too.

Anyway, if you are having irritable intestines, clustering, gas, frequency, try stopping the coffee- even if your bm problems are many, many hours after your morning joe.

I have read that there are elements in coffee beyond the caffeine that may be culprits but seems not to be well understood. Interested in other people's thoughts on this. May stop the kefir for a few days too and see if that is part of my transformation.

Anyway, giddy about this all! :D

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: No-Joe Miracle

Postby ams5796 » Mon May 06, 2013 10:34 am

Wow, I was so hoping this isn't what your title meant. haha I've been in denial about coffee for years. I love it and I would find it really hard to give up, but if it would improve my bowel issues then, it would be worth it! Thanks for sharing your success story I'll have to think about this.



Ann
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

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: No-Joe Miracle

Postby tammylayne » Mon May 06, 2013 11:00 am

Very interesting....I hope this is the case for you!! If you loved your coffee I am sure it would be tough, but it would be a reasonable tradeoff for many people to get their bowels under control.

I have hear that coffee can be a culprit, it would make sense when you think that so many people find it helpful to make things "go", and it often has been included on the trigge list of foods for various GI issues.

Something that also might help in the morning if you need a little assistance is even a cup of hot water,,,as it should be the "hot liquid" that helps get things going...or so I have heard.
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

usopen
Posts: 188
Joined: Mon Jul 18, 2011 12:37 pm

Re: No-Joe Miracle

Postby usopen » Mon May 06, 2013 11:23 am

Thanks for sharing that. I have been wanting to give up that cup of coffee. But lately, I am having more intestinal issues, etc., so this is my kick-in-the-behind to just go ahead and drink more water and tea.
So glad you shared this.....any and all info is key.

Would you mind updating this thread after you have stopped the kefir for a while. I am always curious, too, if maybe something else causes something. That's a good call to rule everything out or in.

Thank you.
Joan

pog451
Posts: 799
Joined: Thu Oct 13, 2011 6:11 am
Facebook Username: andrew.morgan

Re: No-Joe Miracle

Postby pog451 » Mon May 06, 2013 1:57 pm

My love for coffee far outruns (pun intended) my GI issues at the moment, but its an interesting idea to fall back on if they get worse.
09.11 Dx @ 46, uT3uN1M0 G2
11.11 radio+Xeloda
01.12 LAR
03.12 Xeloda
09.12 Liver mets, 2 LN
09.12 Folfox+Avastin
02.13 Resection
04.13 Folfox & Avastin
11.13 Local recurrence
02-07.14 FOLFIRINOX
08.14 Re-rediation
Left us 28.05.2015

Cj51
Posts: 893
Joined: Thu May 13, 2010 5:58 pm
Location: Midwest

Re: No-Joe Miracle

Postby Cj51 » Mon May 06, 2013 3:43 pm

I may be in denial about the coffee thing, but I take a really strong probiotic, VSL#3 and it has made a world of difference. Kefir, especially the home made kind with grains, is a VERY potent probiotic, so it's possible that it's making a pretty big difference for you. It has a larger variety of 'good bugs' than regular yogurt, and in much higher concentrations. Unfortunately, since my chemoradiation and surgery fun, I haven't been able to tolerate any dairy, not even Kefir. I'm aware that it can be cultured in non dairy milks, but just haven't gone there yet. I did try stopping the VSL#3 once, but my problems got worse pretty quickly, so I started it up again. It sort of comes and goes for me, I have a few weeks or months that are great, and then things go to heck. I have between 2 and 3 cups of very strong coffee per day. The kind of coffee you drink might also have an effect. The better coffees have less of the bad acidity in them, and are less likely to cause problems. I tend to go back and forth--for awhile i was great, then things went to heck for a few months, to the point where I was seriously considering surgery again. Then things started looking up and I'm better--not fabulous, but better, and able to start working some again. I hope it lasts.

I'm so glad to hear you're doing better! Even if you did have to give up coffee.


Cj
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
4/2020 NED

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: No-Joe Miracle

Postby Badass » Mon May 06, 2013 3:50 pm

HI CJ51,
Thanks for your reply. Just wanted to say that I have been taking high quality probiotics all along and my kefir is lactose free. I also drink only organic, good quality coffee that I grind myself. It is possible that the probiotics in the kefir are different bacteria from what I am taking in capsules and are a better fit for my digestive tract but I am pretty sure it is the coffee cessation. I will lay off kefir for a couple of days and report back.

If you are interested, the kefir is Lifeway Organic non-fat (or lowfat?) and is 99% lactose free although it is made from cows milk. Has a lot of probiotic fortification.

Best to you!
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

Bob_Weiss
Posts: 743
Joined: Sun Apr 11, 2010 11:23 am
Location: Brooklyn, NY

Re: No-Joe Miracle

Postby Bob_Weiss » Mon May 06, 2013 4:27 pm

When I seem to be developing diarrhea, I drink 1 - 2 cups of tea (regular or green tea) and that usually helps. I read that tea contains chemicals known as tannens, which help to prevent diarrhea although drinking too much tea can lead to constipation. This does not usually apply to the herbal teas.
Stage 3 R/C -1 node+ ( 7/09)
5 wks radiation, 2 wks chemo: 5FU (8-9/09)
Rectal surgery: tumor removal (11/09)
10 rounds Xeloda: 3000mg/daily 1 wk on/1 wk off (1/10-6/10)
Supplements: Aspirin, Calcium, Vit. D3
03/27/17: 7+ yrs. since surgery--still NED

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: No-Joe Miracle

Postby Badass » Mon May 06, 2013 6:56 pm

tammylayne wrote:
Something that also might help in the morning if you need a little assistance is even a cup of hot water,,,as it should be the "hot liquid" that helps get things going...or so I have heard.

Yes, I have heard that... the hot tea doesn't seem to start the peristalsis, but maybe it is inhibitory as Bob Weiss suggests.

Thanks
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: No-Joe Miracle

Postby Badass » Mon May 06, 2013 6:58 pm

usopen wrote:Would you mind updating this thread after you have stopped the kefir for a while. I am always curious, too, if maybe something else causes something. That's a good call to rule everything out or in.

Thank you.
Joan


Sure thing! I am not quite ready to monkey with success but will try this soon.

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: No-Joe Miracle

Postby Badass » Mon May 06, 2013 7:03 pm

ams5796 wrote: I've been in denial about coffee for years. I love it and I would find it really hard to give up, but if it would improve my bowel issues then, it would be worth it!

Ann


OMG, it is soooo worth it. Coffee in the morning is something I have lived for for most of my adult life. I adore it, love grinding the beans, the ritual of the pour over, the smell, the taste and the surge of energy. Helps my mood too! I can't believe, though, how easily I can let it go because of the total turn-around in my life. It is like a fifty pound weight on my shoulders was lifted as I go through the day. If you decide to try it, I hope it helps you too!
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

seva
Posts: 413
Joined: Tue Jun 22, 2010 2:28 pm

Re: No-Joe Miracle

Postby seva » Mon May 06, 2013 7:36 pm

JMO I think it is the kevir. I never drink coffee and rarely, less than once a month, drink hot tea. My bowels still do their own thing. I cluster ever other night give or take a night. My clusters last a few hours and are between 8-12 in frequency. I really don't do much in the diet area except stay away from spicy and fried foods. I eat fresh veggies and fruits, sweets and a bit of red meat. Nothing has a positive effect on my bowels or nonstop gas.

No Dr. has perscribed probiotics, I have been reading the emena dialog and may give that a try after conculting my surgeon.

Glad you found something to help.
RC 10/09
Stage IIA
Chemorad 6 weeks, 5fu 24/7
LAR 2/10
Reversal 4/10
Chemo 5fu 2 rounds -1 week on 3 weeks off
ct scans 9/10 , 3/11,9/11, 9/12 NED!!!

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: No-Joe Miracle

Postby Badass » Mon May 06, 2013 7:46 pm

I really doubt it is the kefir because I have been drinking it all along, although admittedly more lately. Also I did experiment with half a cup of coffee while on this kefir kick and had very bad results. But I am keeping an open mind!
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

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mstults
Posts: 1327
Joined: Fri Nov 30, 2012 11:23 am

Re: No-Joe Miracle

Postby mstults » Tue May 07, 2013 2:56 am

Kefir is a miracle for my digestive system.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: No-Joe Miracle

Postby Badass » Tue May 07, 2013 6:12 am

Ok, will move the experiment. Kefir stops as soon as my supply runs out. Going to be hard, though...kefir is the new coffee!
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)


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