Extrusions vs Nuggets

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Big Jay
Posts: 35
Joined: Fri Jun 17, 2016 5:41 pm
Location: Baltimore, MD

Extrusions vs Nuggets

Postby Big Jay » Wed Nov 14, 2018 10:06 pm

Evening all, got an odd question for y'all. I'm about 6 months out of reversal surgery and, I have to say, it has not been that bad. Mild LARS but tolerable.

After a few chaotic months post reversal I thought I'd settled down to a pattern. Warning signs are a build up of pressure and, if I make it to the toilet w/in 3-5 minutes, all is well. However, the pooping itself isn't the same as it was pre-surgery. It's kind of like I'm extruding part of a larger mass... similar to the old Play Doh Fun Factory.

Image

Lots of pushing and straining, but not a lot of product, and quite a bit of cleanup... all the while I'm well aware that I'm not done and there's lot more where that came from.

Anyway, something strange and wonderful happened about a month ago. Suddenly when I had to visit the toilet I produced honest to goodness turds. Small nuggets yes, but turds none the less. The urgency remained but the process was quick, complete, and (most importantly) very clean.

Unfortunately this only lasted for about a week.. maybe ten days... then it was back to the Fun Factory. Not sure what happened... my diet's been pretty consistent throughout that time... so, has anyone had a similar experience? Any thoughts on diet and whatnot?
DX at 45yo 6/9/16, 2.4cm tumor, 9cm from Anal Verge, 6/27/16
Clinical staging IIIC, CEA 3.1 7/1/16
30x Chemorad 8/5/16 - 9/16/16
CT/MRI/Scope => CCR 11/1/16... Rolling the dice on Watch & Wait
Snake Eyes: Tiny regrowth at scar 11/1/17
LAR 1/17/18: Path = 3mm tumor, 0/12 nodes Med Onc doesn't recommend chemo.
Reversal 4/17/18

NHMike
Posts: 2323
Joined: Fri Jul 21, 2017 3:43 am

Re: Extrusions vs Nuggets

Postby NHMike » Wed Nov 14, 2018 11:32 pm

I'm familiar with both.
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: 251
Joined: Thu Jul 05, 2018 6:03 pm

Re: Extrusions vs Nuggets

Postby Gravelyguy » Thu Nov 15, 2018 6:41 am

Hi Big Jay,

That is so funny! I can totally relate. I am about a month behind you and have a pretty good routine going but is definitely not “normal” pooping. I haven’t had 10 days in a row but have experienced the times when I think that was pretty normal and also the extrusions.

The most normal has been the couple of days after my 1 year colonoscopy so I suspect it has something to do with space inside. I think the scope opened things up and that helped. Of course it didn’t last for long.

I wonder if over times things stretch out and become more normal?

Anybody farther out want to weigh in on the subject?

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

margiej
Posts: 88
Joined: Sat Apr 14, 2018 8:46 am

Re: Extrusions vs Nuggets

Postby margiej » Thu Nov 15, 2018 8:58 am

This is an ongoing problem for me too, and I am nearly three years out from my resection. I feel like it's diet related, but I can't pinpoint it.
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/17
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

User avatar
susie0915
Posts: 939
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Extrusions vs Nuggets

Postby susie0915 » Thu Nov 15, 2018 9:19 am

I understand this so well. You think you have turned a corner and nope, not to be. I tried different things for a year and a half. Not having a rectum to store stool until it is filled and ready to evacuate I think is the issue. Yes, diet can make things difficult but I think the lack of a storage facility is the main issue. Every little piece of stool that would've been stored for some time is ready to be evacuated immediately. It is why we go many times a day with very little output. It was suggested to me to use a daily laxative or daily tap water enemas to empty the lower bowel. I chose to do daily enemas as I felt I had more control of when to have a bowel movement. It takes approximately 30-45 minutes and I am bathroom free for the day until I do again the next morning. It has given me quality of life. No, I wish I did not have to do enemas, but it is what it is and I can now eat without fear, have given up medications except a couple lomotil/day for peace of mind, my bottom feels better, and I can participate in life with anxiety of bathroom issues. Some people only use enemas when going to event and want no issues, or when they begin to cluster. I choose to do everyday because it makes the process much easier as stool doesn't build up and the water flows easier. It can be awkward at first and takes a little practice to become proficient, but I had now been doing for almost 2 years and probably could do with my eyes closed. I have also been able to take my equipment and use when traveling with no issues whatsoever. It is something to think about. Many people can do pretty well with taking fiber, meds and diet. For me just too inconsistent. Just and FYI, not all doctors support enemas, others recommend them, and others like my surgeon just said "okay" when he found out and was glad I was doing better. It is becoming more accepted in the medical community though. Good Luck.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Tupelo honey
Posts: 40
Joined: Tue Jul 19, 2016 7:57 pm

Re: Extrusions vs Nuggets

Postby Tupelo honey » Fri Nov 16, 2018 11:44 am

I struggled with this for a year or more, constantly using Colace / Senna / Immodium and never found an answer till I added 1-2 tablespoons of Nopalina (fiber that contains senna) every morning.

With fiber for bulk, I'm able to control consistency (Extrusion vs. nugget) with a daily Miralax dose - for me, the magic amount is half a dose daily. If I skip it for a day or two, I'm struggling with multiple protracted toilet trips to squeeze out hard, milkdud-sized poops. If I take a full dose of Miralax, I have soft, sticky extrusions for a day or two.

I still use immodium once daily in the am to control urges as well, but I believe adding fiber was the answer to a lot of my bowel issues. And it probably helps that the Nopalina fiber I use has prebiotics and senna as well as insoluble fiber. I'm sure the effective amounts of each (fiber, Miralax, Immodium) vary from person to person but I can say, I rarely have to think about my bowel habits at all. I usually go in the morning and then again around 6 pm, and have normal size/shape/consistency.

I'm also a believer in probiotics, mainly for immune system function, and take one daily. I don't think that affect the bowel function but I'm throwing it in there in case it does.
Last edited by Tupelo honey on Fri Nov 16, 2018 1:34 pm, edited 3 times in total.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED
05/2018 NED
11/2018 NED
11/2019 NED

NHMike
Posts: 2323
Joined: Fri Jul 21, 2017 3:43 am

Re: Extrusions vs Nuggets

Postby NHMike » Fri Nov 16, 2018 11:46 am

This is actually a fantastic discussion. I have saved a link to it on my homepage.
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: 251
Joined: Thu Jul 05, 2018 6:03 pm

Re: Extrusions vs Nuggets

Postby Gravelyguy » Fri Nov 16, 2018 12:42 pm

I have a bowl or two of oatmeal for breakfast and take a good probiotic and that has seemed to really help. I teach middle schoolers so can't be running back and forth to the bathroom all day. I am pretty consistently going in the morning when I wake up. This is usually a 10-20 min time. Then again in the pm. The pm time is more variable and I expect it is because of diet.

The biggest issue for me is clustering. This can be problematic when I have early morning meetings. I am thankful to have control back and to be doing as well as I am. Actually thankful to be here period. There are times though when the clustering gets in the way of something (getting some place on time, meals, etc) when I get a little frustrated.

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

Tupelo honey
Posts: 40
Joined: Tue Jul 19, 2016 7:57 pm

Re: Extrusions vs Nuggets

Postby Tupelo honey » Fri Nov 16, 2018 1:23 pm

It's an easy morning routine. I mix the Nopalina and Miralax together with water or juice, and take an Imodium with it. Over time, I've dialed back the quantities as much as I can for personal effectiveness. I used to use the 2 tablespoons of Nopalina as suggested on the package, but for us rectum-less folks, more fiber result in more bathroom trips. There's a little bit of planning available. I can skip or delay the day's fiber and Miralax till evening if, for instance, I have a flight the next day and I may take an extra Imodium the day of the flight.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED
05/2018 NED
11/2018 NED
11/2019 NED

Big Jay
Posts: 35
Joined: Fri Jun 17, 2016 5:41 pm
Location: Baltimore, MD

Re: Extrusions vs Nuggets

Postby Big Jay » Fri Nov 16, 2018 9:14 pm

Hmm... maybe a bit of daily fiber would be a good thing. My diet varies quite a bit from day to day but there isn't a lot of fiber in it.

I'm liking Bob's recommendation, in another post, for dark chocolate. Even if it doesn't help in my case I won't turn down an excuse for some chocolate.. the darker the better...
DX at 45yo 6/9/16, 2.4cm tumor, 9cm from Anal Verge, 6/27/16
Clinical staging IIIC, CEA 3.1 7/1/16
30x Chemorad 8/5/16 - 9/16/16
CT/MRI/Scope => CCR 11/1/16... Rolling the dice on Watch & Wait
Snake Eyes: Tiny regrowth at scar 11/1/17
LAR 1/17/18: Path = 3mm tumor, 0/12 nodes Med Onc doesn't recommend chemo.
Reversal 4/17/18

Tupelo honey
Posts: 40
Joined: Tue Jul 19, 2016 7:57 pm

Re: Extrusions vs Nuggets

Postby Tupelo honey » Fri Nov 16, 2018 10:23 pm

Big Jay wrote:....

I'm liking Bob's recommendation, in another post, for dark chocolate. Even if it doesn't help in my case I won't turn down an excuse for some chocolate.. the darker the better...


My mother in law swears by coconut macaroons for ibs and diarrhea. Another delicious natural remedy to try. Like the chocolate, there's certainly some anecdotal support for it if you google.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED
05/2018 NED
11/2018 NED
11/2019 NED

NHMike
Posts: 2323
Joined: Fri Jul 21, 2017 3:43 am

Re: Extrusions vs Nuggets

Postby NHMike » Sat Nov 17, 2018 6:07 pm

Gravelyguy wrote:I have a bowl or two of oatmeal for breakfast and take a good probiotic and that has seemed to really help. I teach middle schoolers so can't be running back and forth to the bathroom all day. I am pretty consistently going in the morning when I wake up. This is usually a 10-20 min time. Then again in the pm. The pm time is more variable and I expect it is because of diet.

The biggest issue for me is clustering. This can be problematic when I have early morning meetings. I am thankful to have control back and to be doing as well as I am. Actually thankful to be here period. There are times though when the clustering gets in the way of something (getting some place on time, meals, etc) when I get a little frustrated.

Dave


Oatmeal worked for me today. Though it's hard to tell in one day as things working well one day may have consequences for another day.
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: 251
Joined: Thu Jul 05, 2018 6:03 pm

Re: Extrusions vs Nuggets

Postby Gravelyguy » Sat Nov 17, 2018 6:47 pm

Good to hear, Mike! Hopefully it will be a fairly permanent help!

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

Tupelo honey
Posts: 40
Joined: Tue Jul 19, 2016 7:57 pm

Re: Extrusions vs Nuggets

Postby Tupelo honey » Sat Nov 17, 2018 9:12 pm

That's great. Oatmeal has both soluble and insoluble fiber. I think fiber is the key. While I believe the senna leaves in nopalina are helpful for ME, I have a tendency towards constipation(nuggets). If that's not an issue, fiber alone is prob helpful no matter what the source is. I was amazed at the difference the first time I used fiber, and have rarely skipped a day since.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED
05/2018 NED
11/2018 NED
11/2019 NED

NHMike
Posts: 2323
Joined: Fri Jul 21, 2017 3:43 am

Re: Extrusions vs Nuggets

Postby NHMike » Sat Nov 17, 2018 9:20 pm

Tupelo honey wrote:That's great. Oatmeal has both soluble and insoluble fiber. I think fiber is the key. While I believe the senna leaves in nopalina are helpful for ME, I have a tendency towards constipation(nuggets). If that's not an issue, fiber alone is prob helpful no matter what the source is. I was amazed at the difference the first time I used fiber, and have rarely skipped a day since.


I have Nopalina in my Amazon cart and will try it. I have CVS Fiber and will keep taking that but I'm willing to try other products to see if they are an improvement.
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


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