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

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Buckeye
Posts: 92
Joined: Mon Jan 18, 2016 7:02 pm

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

Postby Buckeye » Tue Jan 19, 2016 11:15 am

I have a little rectum left and have never had chemo/rad. They only took 6inches in total. I wonder if this is favorable for a better chance at a somewhat new normal?
Dx 10/20/15 stage 1 T1N0M0 1.3cmx1.1cmx1cm low grade ( well to moderately differentiated) Rectal cancer age 47
Loving Husband and father of two girls age 19 & 15 Sole income provider
CEA <0.5
CT, MRI and PET show no metastatic spread
LAR Laparoscopic TME 11/30/15 with Illo
Pathology clean no lymph node or vascular involvement. Confirmed Stage1
No chemo/rad cancer free now and forever.
Illo reversal 01/26/16

justin case
Posts: 4104
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

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

Postby justin case » Tue Jan 19, 2016 7:22 pm

Wally, as an example, have you ever driven on the Achafalaya bridge in Louisiana, sometimes you get stuck, and sometimes you don't. I wouldn't attempt it for at least a year. :roll: :roll: :roll: It is 22 miles long with no way off :shock: :shock:
if stuck, I really don't mind pissin off the bridge, but doing the wipe in front of 400 vehicles might just get me unnerved. :shock: :shock: :shock:
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

ozziej
Posts: 198
Joined: Thu May 21, 2015 8:35 pm

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

Postby ozziej » Wed Jan 20, 2016 12:52 am

Michael,
In your own special way, you have described the problem perfectly :mrgreen:
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!! : )

drw
Posts: 45
Joined: Sun Mar 30, 2014 4:43 am

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

Postby drw » Fri Jan 22, 2016 6:58 am

Wallyjr, hopefully you will have a better outcome because you didn't have radiation. I am 10 months out and still having difficulty. I have very little rectum left, but my doctor said my problems are a result of radiation damage. I have major narrowing and have been dilated three times. I'm still adjusting and trying to find what works for me. This has been the most difficult thing I have ever experienced....it's been a long, frustrating, painful 10 months. It is getting better though, I have more control and the pressure and spasms are getting better. Thanks to all of you for your posts, I get better information here than from my doctors. I look forward to all of your updates to read of your successes.
4/14 dx rectal cancer at 45 yoa
4/14 transanal excision
6/14 lar - 2 positive lymph nodes stage 3
8/14 started radiation and xeloda
1/15 completed chemo
2/15 Ned :)
3/15 reversal

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 Feb 05, 2016 8:28 am

Hey all -

Thought I'd update. Things seem to be improving a bit (now 6 weeks after reversal) although still going quite a bit (20+ times/day). Bathroom trips are grouped now, in what I call episodes, rather than just going on all day. Episodes can range from 2 to 4 hours. My joke with my family that the first three weeks after reversal were unlivable, now it's just unworkable.

Have added the Heather's Tummy Fiber to my routine, which also seems to be helping, although I did not eliminate Metamucil. Also was allowed to add Imodium, which helps quite a bit.

Had an issue I wanted to raise. Recently started adding some insoluble fiber to the diet (fruit and vegetables and whole grains) on the theory that this might cut down on clustering by helping move things through the system, and in fact it does seem to have that effect. Since reversal, however, my stool has remained relatively thinner than it was pre-diagnosis, and since I added the fruits and vegetables, bulking up the stool, I get more pain and anal spasms after moving my bowels. Is this normal? Is there an anal narrowing that occurs during the period of the temporary ileostomy or as a result of the LAR that just needs to be worked through (re-stretched as it were) or are the pain, spasms, etc indicative of some other issue? Just don't know what's normal - what I just have to work through and what might be a sign of an issue.

Be grateful for any thoughts.

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."

Sams wife
Posts: 745
Joined: Sun Jan 11, 2015 2:49 pm

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

Postby Sams wife » Fri Feb 05, 2016 11:13 pm

Yes. I think stuff should be stretched. But I don't really know. Was just going to get this back up top for you. Bananas are always good, I think.
Maybe it the skins on the fruits. Good luck
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

Badass
Posts: 1156
Joined: Sun Jan 15, 2012 11:42 am

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

Postby Badass » Fri Feb 05, 2016 11:31 pm

Jim, I know we are all different, but I did find the Metamucil increased my gas and trips to the bathroom even though it bulked up my stool. I would suggest trying to just do the Heathers and see what happens.
As for insoluble fiber and discomfort-- it may be early in your healing for lots of roughage. I would check with your colorectal surgeon about your pain.

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 Feb 05, 2016 11:39 pm

Thanks Sams Wife - I really need to get something for these spasms in the meantime, I guess. I end up taking pain meds, but I can't spend the next two months sitting around getting half-smacked on pain meds. There must be a better way.

Hey Jane - thanks - I think I will do that - I find that sometimes the gas creates a pressure that is pretty painful too, so can't hurt drop the Metamucil and see what happens. I think you're right about the roughage too - just been dying to get some fruits and veggies again, but perhaps the price is too high :shock:

I see the surgeon again week after next and will ask - just wondered why, after all this, I'd still be having stool more narrow than the old days. Understood when it was necessary to get around the tumor, but would've thought that I'd be good to go now. Oh well. One day at a time, I guess. Thanks again.
- 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: 745
Joined: Sun Jan 11, 2015 2:49 pm

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

Postby Sams wife » Sat Feb 06, 2016 12:39 am

JDMNYC wrote:Thanks Sams Wife - I really need to get something for these spasms in the meantime, I guess. I end up taking pain meds, but I can't spend the next two months sitting around getting half-smacked on pain meds. There must be a better way.

Hey Jane - thanks - I think I will do that - I find that sometimes the gas creates a pressure that is pretty painful too, so can't hurt drop the Metamucil and see what happens. I think you're right about the roughage too - just been dying to get some fruits and veggies again, but perhaps the price is too high :shock:

I see the surgeon again week after next and will ask - just wondered why, after all this, I'd still be having stool more narrow than the old days. Understood when it was necessary to get around the tumor, but would've thought that I'd be good to go now. Oh well. One day at a time, I guess. Thanks again.


A smoothie? I had a banana, strawberry yogurt & I forgot what else but it had orange juice in it. You might need to watch out for seeds tho. I'm gonna get another one & watch them make it. Hubby's nurse was calling at the time & I didn't pay attention. Maybe I just had them put a little spinach in it. But a smoothie may grind roughage up for you.
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

Badass
Posts: 1156
Joined: Sun Jan 15, 2012 11:42 am

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

Postby Badass » Sat Feb 06, 2016 10:08 pm

Your stools are narrow because your passage is narrow. Our days of rectum sized and shaped poops are over!
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 » Sat Feb 06, 2016 11:18 pm

Badass wrote:Your stools are narrow because your passage is narrow. Our days of rectum sized and shaped poops are over!


Well that's logical - hadn't really thought of it that way. Thanks. :D

Much easier day. Just Heather's Tummy Fiber today (no Metamucil), and a pretty close to BRAT diet. Couple of long soaks in the jacuzzi to see if maybe it would help me unwind. Also drank some peppermint tea - could be a placebo effect, but thought it helped keep things more mellow.

More to follow - thanks again Jane.
- 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 » Sat Feb 06, 2016 11:24 pm

Sams wife wrote:A smoothie? I had a banana, strawberry yogurt & I forgot what else but it had orange juice in it. You might need to watch out for seeds tho. I'm gonna get another one & watch them make it. Hubby's nurse was calling at the time & I didn't pay attention. Maybe I just had them put a little spinach in it. But a smoothie may grind roughage up for you.


That's a good idea - I could at least get some greens, etc, and hopefully avoid the digestive issues. 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."

Buckeye
Posts: 92
Joined: Mon Jan 18, 2016 7:02 pm

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

Postby Buckeye » Sun Feb 07, 2016 3:45 pm

I am 12 days post surgery and I have been taking one dose of Metamucil a day for about 4 days and I still get what I call tremor poo's. They come before and after I have a "normal" poo. Anyone have ideas how I can link up these tremor poo's to the big one? More Metamucil? I try to hold the tremors, but sometimes the urge gets so great I think it's the big one only to be let down by mucus. Do I need to give the one dose treatment more time? I see the nurse in 3 days should I ask about upping my dose.? I don't think Imodium is what I need my poo is loosely formed, if I take Imodium will it make poo to hard? Thanks for all you insights.
Dx 10/20/15 stage 1 T1N0M0 1.3cmx1.1cmx1cm low grade ( well to moderately differentiated) Rectal cancer age 47
Loving Husband and father of two girls age 19 & 15 Sole income provider
CEA <0.5
CT, MRI and PET show no metastatic spread
LAR Laparoscopic TME 11/30/15 with Illo
Pathology clean no lymph node or vascular involvement. Confirmed Stage1
No chemo/rad cancer free now and forever.
Illo reversal 01/26/16

ozziej
Posts: 198
Joined: Thu May 21, 2015 8:35 pm

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

Postby ozziej » Sun Feb 07, 2016 4:29 pm

Hi fellow reversalists
Jim, I'm 9 months out and the size of my stool is still a lottery. More days now with normal size but still many days with narrow stool. Seems that time is the factor here.
Wally, I think time is also the factor for changing multiple small stool into one larger effort. I agree about avoiding the immodium, especially if your stools aren't loose. In fact I've found laxatives better for improving consistency and predictability.
Wishing you both a smooth trajectory.
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!! : )

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 Feb 07, 2016 6:18 pm

oozier wrote: In fact I've found laxatives better for improving consistency and predictability.


Thanks Jan - when you have a moment I'd be interested in hearing about this. I'm doing 4-6 Imodium/day on the theory it slows the bowel, but would be interested to know what you meant about laxatives vis a vis consistency and predictability.

Thanks,

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."


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