Reversal Log: Experience,Problems, Q & A's

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justin case
Posts: 4214
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Reversal Log: Experience,Problems, Q & A's

Postby justin case » Sun Jan 03, 2016 3:31 pm

I wouldn't have made it without Ensure, potato soup and cold boiled shrimp :roll:
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Sun Jan 03, 2016 3:41 pm

justin case wrote:I wouldn't have made it without Ensure, potato soup and cold boiled shrimp :roll:
Michael


Good suggestions all; thank you Michael.
Last edited by JDMNYC on Sun Jan 03, 2016 9:06 pm, edited 1 time in total.
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby Sams wife » Sun Jan 03, 2016 8:23 pm

JDMNYC wrote:Hey all -

Anyone have any good (healthy) suggestions for the low fiber/low residue diet for the first month or so following reversal? Trying to incorporate some items more heathy than white bread, pasta, saltines, etc. without violating the intent of the regimen. Thanks.

Jim


Since you had radiation, have you ever looked at the BRAT diet? And as everyone else reminded me, lots of protein for healing!!

They have a deal at the store, the vegetti? I think. You can make pasta from squash. A friend says it is really good. She she is using Atkins diet for her hubby but it is just for weight loss. It's high protein, low carb. Not low fiber tho. I think the fiber comes from veggies.

No reversal here. Just trying to give you some ideas.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Sun Jan 03, 2016 9:08 pm

Sams wife wrote:
Since you had radiation, have you ever looked at the BRAT diet? And as everyone else reminded me, lots of protein for healing!!

They have a deal at the store, the vegetti? I think. You can make pasta from squash. A friend says it is really good. She she is using Atkins diet for her hubby but it is just for weight loss. It's high protein, low carb. Not low fiber tho. I think the fiber comes from veggies.

No reversal here. Just trying to give you some ideas.


Thanks Sams Wife - some Atkins emphasis might be a good idea. Plenty of protein for wound healing, and low fiber. Thank you.
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby Sams wife » Sun Jan 03, 2016 9:13 pm

JDMNYC wrote:
Sams wife wrote:
Since you had radiation, have you ever looked at the BRAT diet? And as everyone else reminded me, lots of protein for healing!!

They have a deal at the store, the vegetti? I think. You can make pasta from squash. A friend says it is really good. She she is using Atkins diet for her hubby but it is just for weight loss. It's high protein, low carb. Not low fiber tho. I think the fiber comes from veggies.

No reversal here. Just trying to give you some ideas.


Thanks Sams Wife - some Atkins emphasis might be a good idea. Plenty of protein for wound healing, and low fiber. Thank you.


Your welcome. If it helps.
If not, it wasn't me!! :oops: 8)
I bet you can find something off of one of them. Just eat lots of small meals like lee & Jude. That's how I got hubby eating. Pb&J on crackers helped too, I think

Folic acid in his cereals or breads did seem to give him cramping after 5FU, So I'm glad he didn't like noodles at the time.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Mon Jan 04, 2016 1:12 pm

Sams wife wrote: Pb&J on crackers helped too, I think


Can't go wrong with PB&J on nearly anything :D
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

Badass
Posts: 1158
Joined: Sun Jan 15, 2012 11:42 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby Badass » Fri Jan 08, 2016 8:38 pm

Just an update from me--- I started this thread around three years ago-- amazing to see it continue.

I never tolerated Metamucil very well (gives me lots of gas and frequency). I have been on the hunt for other soluble fibers.
For a while I was happy with Citrucel capsules but now I have found something even better.
It's the fiber of the plant Acacia Senegal and is marketed for IBS sufferers as "Heather's Tummy Fiber." I get the organic version in a powder from Amazon. I have gotten great results with it- reduced gas and frequency, fewer clusters and "pebble poos." I would be very interested to hear if others have similar experiences.

Wishing you all great "reversal logs" (so to speak) :wink:

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)

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Fri Jan 08, 2016 9:32 pm

Badass wrote:Just an update from me--- I started this thread around three years ago-- amazing to see it continue.

I never tolerated Metamucil very well (gives me lots of gas and frequency). I have been on the hunt for other soluble fibers.
For a while I was happy with Citrucel capsules but now I have found something even better.
It's the fiber of the plant Acacia Senegal and is marketed for IBS sufferers as "Heather's Tummy Fiber." I get the organic version in a powder from Amazon. I have gotten great results with it- reduced gas and frequency, fewer clusters and "pebble poos." I would be very interested to hear if others have similar experiences.


Thanks Jane - good to know (and thank you for starting this thread - I've found it enormously useful). I actually used Heather's before diagnosis as a prebiotic; I will work it back in again.

Saw surgeon on Wednesday. My complaints: insane frequency during the evenings (maybe 30 trips) and really bad pain, exceptional pain, as if I was passing broken glass, followed by spasms. She advised to start the Metamucil, try to eat small meals (I had hardly been eating during the day for fear of the pain) and gave me some ointments and pain meds (pain is thought to be from stool hitting microscopic tears in colon/remaining rectum/anus (tears from surgery and general disuse during ileostomy)). I started eating oatmeal, lentil soup, etc., along with Metamucil. Getting some bulk from it, and so far seems to reduce evening frequency from 30 to maybe 20. The pain is still pretty severe.

Only been reversed three weeks at this point, so I suppose there's no way through it but through it, but it's a lot less fun than I expected :shock:

Jim
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

Badass
Posts: 1158
Joined: Sun Jan 15, 2012 11:42 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby Badass » Sat Jan 09, 2016 8:33 am

I would be very interested to hear about the effect of Heather's Fiber on your current difficulties, Jim. I am wondering if the lentil soup is contributing to your frequency. I hope your pain eases soon! Also skinless apples and applesauce, bananas are good additions to the BRATish diet.

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)

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

Re: Reversal Log: Experience,Problems, Q & A's

Postby tammylayne » Sat Jan 09, 2016 10:54 am

DId your surgeon ok the use of Immodium? Mine had me start using as soon as I went home - but every doc has their own opinion on that. Coupled with the other suggestions, maybe this could help in the evenings? My rule was if I had more then a coupl BMs in an hour...out came the immodium. As always though...check with your own doc.

I also found it interesting when my surgeon told me that clustering can be the result of constipation for some people. NOT this early in the reversal process....right now is probably more about your body learning...or re-learning how to function - period. But down the road if this is still an issue, maybe this concept is worth thinking about. I would cluster really bad....30 times in one day...then have a day of nothing...a day of 1 or 2....then 30...repeat. He said in many cases...the day of nothing or 1 or 2 is the real culprit.. and that making sure you are going every day can help to keep the clustering down. That is where your fiber supplements would help I guess. WHen I looked at it that way...it made sense. I was taking the nothing days as a "vacation" from the washroom, a GOOD thing, but in reality, they really weren't. I guess 6 - 8 times a day everyday would have been better :wink: My "one a day" for ME is now the best solution - not clustering OR constipation....butt of course...not for everyone.

This is not gospel for everyone, so please don't take it as that...just something that maybe COULD be of help to some...or at least a different way of looking at it.
Just my two cents...

Thinking about ya JIm...hang in there!!!
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."

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Sun Jan 10, 2016 11:10 am

Badass wrote:I would be very interested to hear about the effect of Heather's Fiber on your current difficulties, Jim. I am wondering if the lentil soup is contributing to your frequency. I hope your pain eases soon! Also skinless apples and applesauce, bananas are good additions to the BRATish diet.

Jane


Thanks Jane - I started (or re-started, if you count the year off) the Heather's today with one teaspoon added to my McCann's Steel Cut Oats. Goal is to gradually walk it up to two tablespoons/day.

Can't swear that the lentil soup is not contributing to frequency, but my thought it is that lentils are a relatively high soluble fiber food, and that soluble fiber is a good thing in that it may reduce clustering, so I think I will ride it out a bit with the lentils and see. Of course, the experimental aspect of all this cannot be denied :)

I will advise re: Heather's - how much are you taking?

Jim
Last edited by JDMNYC on Sun Jan 10, 2016 5:21 pm, edited 2 times in total.
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Sun Jan 10, 2016 11:34 am

tammylayne wrote:DId your surgeon ok the use of Immodium? Mine had me start using as soon as I went home - but every doc has their own opinion on that. Coupled with the other suggestions, maybe this could help in the evenings? My rule was if I had more then a coupl BMs in an hour...out came the immodium. As always though...check with your own doc.


Hey Tammylayne -

Surgeon was not excited about Imodium at this point. I think they are concerned about the possible constipating effects in conjunction with the relative newness of the colon-remaining rectum connection.

I think you're right about the role of fiber in avoiding low/no output days, which helps avoid clustering on the high(er) output days.

My current theory is that they start you with a low fiber/low residue diet because of the inflammation of the digestive system post-surgery, and the possibility of obstruction (which makes sense). My MSK roommate had to have his reversal reversed on account of obstructions, and I know I don't want that. The downside of the low fiber/low residue, I speculate, is that: (i) it's not terribly nutritious; and (ii) it doesn't give the colon much to work with in trying to reestablish its functions of: (a) de-watering waste/turning it into formed stool; and (ii) extracting/absorbing minerals. Tough to do much with Wonder Bread.

My base assumption is that clustering is essentially one bowel movement spread over 30 bathroom visits. My theory is that moving to a higher soluble fiber diet (while being very careful about not taking too much insoluble fiber onboard at this point) will assist in stool bulking and formation, help get larger, more formed stool (and so reduce clustering), and effect a desired change in the PH of the stool (and so reduce burning). So I have been walking up the soluble fiber (Metamucil, oats, lentils, Acacia Senegal powder in the form of "Heather's Tummy Fiber") in an attempt to get larger, more normal, less frequent output.

It's too early to tell yet, but my "episodes" since Thursday night feature: (i) materially fewer trips and (ii) materially more output per trip. Of course, a one-person, three day experiment is worth just about what you might imagine, and it is necessary to consider that the colon may just be re-learning what to do, and would be relatively improving regardless of my diet.

But for now, anyway, I am aiming to maximize soluble fiber without letting insoluble fiber get out of control, hence the oats, beans, and supplements. We will see.

Thinking of you and your upcoming hernia surgery - I hope all goes well.

Jim
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Tue Jan 12, 2016 11:12 am

Badass wrote: I am wondering if the lentil soup is contributing to your frequency.


Jane - two days straight in the bathroom has caused me to reevaluate my position on the lentil soup! :shock: When you're right, you're right. Removed from the current rotation :D

Jim
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

Badass
Posts: 1158
Joined: Sun Jan 15, 2012 11:42 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby Badass » Tue Jan 12, 2016 3:16 pm

Hi Jim,

Sorry you continue to have problems-- and I will be curious as to whether foregoing lentils improves the situation.

Lentil Elimination= Less Elimination :?: :shock:

As to Heather's - I followed the directions on the bag: 1/2 teaspoon 2x a day. I upped it but then got diarrhea but it may have been another trigger (likely). I was very responsive to the 1/2 teaspoon and moved up slowly. I would suggest the same to you as we LAR folk have our own idiosyncratic patterns. I would not set a particular target goal on the dose.

Let me know how it goes for you-- I am very interested and hope you get some relief 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)

ozziej
Posts: 221
Joined: Thu May 21, 2015 8:35 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby ozziej » Wed Jan 13, 2016 1:06 am

tammylayne wrote:I also found it interesting when my surgeon told me that clustering can be the result of constipation for some people. NOT this early in the reversal process....right now is probably more about your body learning...or re-learning how to function - period. But down the road if this is still an issue, maybe this concept is worth thinking about. I would cluster really bad....30 times in one day...then have a day of nothing...a day of 1 or 2....then 30...repeat. He said in many cases...the day of nothing or 1 or 2 is the real culprit.. and that making sure you are going every day can help to keep the clustering down. That is where your fiber supplements would help I guess. WHen I looked at it that way...it made sense. I was taking the nothing days as a "vacation" from the washroom, a GOOD thing, but in reality, they really weren't. I guess 6 - 8 times a day everyday would have been better :wink: My "one a day" for ME is now the best solution - not clustering OR constipation....butt of course...not for everyone.


I think your surgeon's theory is spot on Tammy. I've found that my clustering stops if I take a laxative and sort of reset the system. I'm then fine for a few days. If I feel it building up again I take a laxative and off I go again. I've found that this keeps me to a fairly regular 4 to 6 times a day, which for me is manageable. As you say, if I drop down to one or two times a day I know I'm in for trouble.
Thanks, this info has given me new insight into my experience.
cheers
Jan :)
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )


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