Post treatment crap-a-lot

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GreenMonkey
Posts: 333
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Post treatment crap-a-lot

Postby GreenMonkey » Wed Mar 15, 2017 5:36 pm

Hello Everyone, Green Monkey here...

Trying my best to live a "normal" life post rectal cancer (ileostomy reversed). My quality of life has gone way down due to the need to crap after eating - usually 20 to 30 minutes after a meal. So, I eat healthy but sparingly during the day. My evenings, post dinner, are spent on Chet (the name I gave my bio-bidet). Don't get me wrong, I love Chet, but I need to interact with the world. I can't continue to devote my evenings to Chet. Has anyone else experienced this? When I say "I crap-a-lot" I mean... 10 or 20 or 30 times a day. All small stools, but firm.

Thanks! Shannon aka GreenMonkey
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: Post treatment crap-a-lot

Postby Lee » Wed Mar 15, 2017 7:24 pm

Some people have found success by doing daily enemas. If you check the search box, I believe tammylane kept a log/thread on her trials of success and failure on this subject. May want to think about it.

I understand your frustration I had that problem as a result of radiation (rectal muscles destroyed). I had 1 hr after eating then was tied to the toilet for the next 2-3 hrs. Many days I had my first meal at 3-4 pm when I knew I was home for the day.

This is drastic, butt I know a few people who did this to get there life back. A permanent colostomy. I have one, my decision and it did give me my life back. I made the decision prior to my surgery to remove my tumor. Have no regrets. Only suggesting it as a last resort.

Good luck, I assume you've tried diet and Imodium to help control this,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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GrouseMan
Posts: 724
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Post treatment crap-a-lot

Postby GrouseMan » Wed Mar 15, 2017 8:27 pm

Green Monkey - I posted the following in the thread about Checking In: viewtopic.php?f=1&t=53421

But here is a copy here as well because it might be found by other folks with the same issue.

Welcome back Green Monkey - Its been a long time. I was hoping you were doing OK. Liked your post about the bidet at Burning Man. Anyway - as you know they often use atropine to slow things down when you are treated with irinotecan. Atropine is an Anticholinergic of which there are many examples available on the market via prescription. They are used to treat many conditions some of which might interest you - gastrointestinal disorders, such as diarrhea, overactive bladder, and incontinence. They usually prescribe these for COPD, and overactive bladder. Have you talked to your GP about what he may suggest? An over the counter incontinence drug might give you some relief also or at least a start to see if one of these might work. I read that Hyland's EnurAid contains a small amount of belladonna which is also an Anticholinergic, low does might do the trick, or if you can talk your GP into prescribing a prescription one to test the waters maybe?

In the case of colon cancer patients some creative imagination might be necessary. You have probably lost some length of colon. So the whole waste processing apparatus is shortened, less absorption of water from the colon so there is always a likely hood of more diarrhea. Things like Rheaban (contains magnesium aluminium phyllosilicate) and Kaopectate (contains Bismuth Subsalicylate) are adsorbents and may help to bind things up some, but that I don't believe is your problem. You need to slow things down. I assume you have tried Imodium? They sometime give you that in prescription form as Loperamide when you are getting FOLFOX and FOLFIRI. That might help but you likely will need to take more than what the box says. - its a used to treat short bowel syndrome which of course is really what many end up with when they have a colon resection! Loperamide is a different kind of drug than the anticholinergic drugs - its actually an Opioid but is not a narcotic. Usually when you are in CRC treatment they let you take as much of this stuff as you need. You just need to be careful not to put yourself in the opposite situation of constipation. It sort of starts to put your colon to sleep if you will.

Here is a link to Loperamide: https://en.wikipedia.org/wiki/Loperamide

Another to short bowel syndrome: https://en.wikipedia.org/wiki/Short_bowel_syndrome

And another about anticholinergics : https://en.wikipedia.org/wiki/Anticholinergic

Have a frank talk with your GP. He should probably know that the adsorbents are not going to work all that well. But maybe Imodium or one of the anticholinergic agents will.

Good luck too you.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

Jacques
Posts: 408
Joined: Sun Dec 28, 2014 10:38 am

Re: Post treatment crap-a-lot

Postby Jacques » Thu Mar 16, 2017 2:13 pm

DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
----
Info links:
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List of Forum Features
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GreenMonkey
Posts: 333
Joined: Wed Jun 12, 2013 5:43 am
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Re: Post treatment crap-a-lot

Postby GreenMonkey » Mon May 22, 2017 2:16 pm

Thank you for your reply! I got a bit sidetracked.... diagnosed with a "suspicious cyst" on my ovary and decided to have a complete hysterectomy. It was done robotically and they also repaired another hernia while they were at it. Received the best news every ... no sign of cancer!

I do best when I eat shitty food... carbs mainly and no fresh fruit or vegetables. So I eat the good stuff only when I'm home.

I realized that my problem is I don't empty out completely. And the stool seems to stay in the exit gate (have no idea what the technical term for that is).
I am seeing a GI guy later this month for a followup. He was in the OR with me during the hysterectomy and he checked out my pouch and also removed scar tissue and adhesions.

glad to read so many of you are doing well...but terribly sad to see those who are no longer with us.
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

tarheelmom
Posts: 163
Joined: Mon Mar 07, 2016 5:55 pm

Re: Post treatment crap-a-lot

Postby tarheelmom » Mon May 22, 2017 5:16 pm

Hi GreenMonkey

I have very similar bowel movements. Things stay in my digestive system for a few days, and then I have many hours of emptying. I have been doing pelvic floor physical therapy which has helped somewhat. The PT seems to have increased the size of the stool so that when I'm emptying the fragments are larger - less rawness. These days I actually envy the dog when she poops ... .
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Post treatment crap-a-lot

Postby JudeD59 » Tue May 23, 2017 12:04 am

I have been drinking Benefiber in my coffee in the morning and in an evening cup of decaf. I don't taste it at all and it isn't gritty. It has helped some to bulk up my stools and make my visits less frequent. I also have problems with fruit and veggies which I use to love. I ate a couple raw baby carrots and thought I was going to die. But cooked potatoes with the skins on helps things come out almost normally.

My oncologist told me to continue the fiber but add in a Lomotil after my morning bathroom trips to give me the afternoon and hopefully some of the evening poop free. That's next on my list to try.

Good luck!
Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

BIG ROB 69
Posts: 62
Joined: Sun Aug 28, 2016 2:00 am
Location: Long Island, NY

Re: Post treatment crap-a-lot

Postby BIG ROB 69 » Wed May 24, 2017 3:41 am

Try morphine. It works for me in so many different ways.
3/18/2015 DX CC Stage3/4 49YO MALE IN NEW YORK
Inoperable...hepatic artery
11/15 oper to rem block...colon bypass
4/16 oper to remove scar tissue
5/16 Lynch pos.
10/16 Two bile tubes installed to relieve jaundice
So far I have done the three main chemo drug rounds and on 12/19/16 start Keytruda.
No chemo after 8/3/16 CEA: 10/14/16-409 12/19/16- 887 Mostly my CEA was in the 140-180 range.
CEA: 1/9/17-415 1/30/17-156.2 2/20/17-120.8 3/13/17-98 4/21/17-83.6 5/12/17-64.7 6/1/17-32.1
7/25/17-32.6


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