Low Anterior Resection Syndrome: Do you have it?

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Buckeye
Posts: 109
Joined: Mon Jan 18, 2016 7:02 pm

Re: Low Anterior Resection Syndrome: Do you have it?

Postby Buckeye » Wed Mar 16, 2016 5:38 am

I got 27. So a mild form , would rather not have it at all! :cry:
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

OrchardWriting
Posts: 53
Joined: Wed Nov 18, 2015 9:10 am

Re: Low Anterior Resection Syndrome: Do you have it?

Postby OrchardWriting » Wed Mar 16, 2016 7:38 am

I guess this doesn't count of you had the works (anus, rectum, sigmoid colon) removed? I would love to find a way to control gas. Eating vegetables is tough for me because I need them and love them, but then get horrible gas that cramps my belly. Anyone have any thoughts?
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Ooops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13.

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

Re: Low Anterior Resection Syndrome: Do you have it?

Postby tammylayne » Wed Mar 16, 2016 9:18 am

I LOVE raw veggies....esp carrots, but they don't share that love. I end up with wicked cramps as well. For me....cooking is the key. That I can handle. Just a thought in case you are also referring to raw veggies...
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."

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Low Anterior Resection Syndrome: Do you have it?

Postby teachpdx » Wed Mar 16, 2016 12:42 pm

OrchardWriting wrote:I guess this doesn't count of you had the works (anus, rectum, sigmoid colon) removed? I would love to find a way to control gas. Eating vegetables is tough for me because I need them and love them, but then get horrible gas that cramps my belly. Anyone have any thoughts?

I love my veggies as well and I suggest eating lots of carbs along with your veggies. I've switched to white rice because brown rice is too hard to digest and find the white rice is a good compliment to veggies - it absorbs stuff. I've also found that Beano works well. Potatoes work well too. Good news if you have constipation issues, just eat what bothers your stomach. I do this sometimes (onions work well for me) when I have a big day planned for the next day and don't want to have to worry about using the loo. :shock:
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: Low Anterior Resection Syndrome: Do you have it?

Postby lauragb » Fri Mar 18, 2016 6:28 pm

Hi Vince,
I just saw your post. And things are still about the same for me so I am still using enemas to go. Unlike people with diarrhea LARS symptoms, I am able to eat raw veggies and fruits in large quantities and need to in order for the enemas to work. Foods I don't eat, white or whole grain pasta, rice of any kind, other things made with white flour. Meat is also a colon clogger so I eat small amounts and not that often. I need to drink a lot of water and sometimes I drink prune juice (when I'm not going anywhere, makes bad gas but helps the enema work.)
I prefer the enemas so I can control when I go, unlike medications that can be unpredictable and for me require multiple trips to the bathroom. I would never have imagined living my life this way but it works for me at least right now. I haven't found doctors to be helpful.

Like Tammylayne, I use a full fledged enema, not a fleet bottle. They don't work. She is a great resource and I would also be happy to answer questions. If you want info, feel free to send a PM.

Laura
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

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chrisca
Posts: 246
Joined: Wed Dec 07, 2011 10:35 pm
Location: Portland, Oregon

Re: Lower Anterior Recestion Syndrome: Do you have it?

Postby chrisca » Sun Mar 20, 2016 8:43 pm

laneylou wrote:...
I am a bit of an evangelist about this, because it was such a big deal for me - the penny that finally dropped and fixed I would say 85% of my reversal issues,and all the ones that were causing me the most distress. Bile acid diarrhea is underrecognized in general. There's no test for it in the US, if you have the symptoms you just try a bile acid sequestrant and see if it helps.

Here's a link to an article about bile acid diarrhea - if this sounds like you and you've had radiation, ask your surgeon/GI/onc about it. You never know if might help.


The link didn't work. Could you please check into it and repost if you can find it? Thanks.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 10 years

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chrisca
Posts: 246
Joined: Wed Dec 07, 2011 10:35 pm
Location: Portland, Oregon

Re: Low Anterior Resection Syndrome: Do you have it?

Postby chrisca » Sun Mar 20, 2016 8:47 pm

I saw this survey too and had to laugh. They didn't ask two very important questions:

1. How much time each day do you spend on the John?

2. Do you have hemorrhoids?

These both are very important to LAR sufferers. Docs need to know how they may affect the outcome and work on improving treatment to improve our productivity by giving us back our time and reducing pain and straining to get out the stools.

I wrote an email to the article authors about it.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 10 years

dhenry
Posts: 1
Joined: Mon Mar 21, 2016 12:27 pm

Re: Lower Anterior Recestion Syndrome: Do you have it?

Postby dhenry » Mon Mar 21, 2016 12:33 pm

Just discovered this site. I had surgery five years ago and have been battling this ever since. My score was 39. Can you PM me with information on how you handle it? Thanks!

tammylayne wrote:Yes...I have this, but I have known about it for a while. I did the quiz and got a 41 : (

I have been doing a daily enema for the past 10 months because of this...and my life is pretty near perfect now...at least when it comes to managing my LARS. 30 minutes every morning and I am good to go for 24 hours about 99% of the time. MUCH better then when I was trying to manage the LARS, nothing seemed to work for me. I was going 20 - 30 times most days.

My surgeon diagnosed this, although I always believed it to be real....VERY real.

Lisa T
Posts: 2
Joined: Sat Apr 30, 2016 12:26 pm

Re: Low Anterior Resection Syndrome: Do you have it?

Postby Lisa T » Sat Apr 30, 2016 1:09 pm

Hi,
I had colon cancer 2 years ago (very low-rectum removed) had my colostomy reversal a year ago this month. I have done just about everything suggested here including biotherapy to try and regain some type of normalcy in my life but not making a whole lot of progress. I go from constipated for 3 days to diaherea to clustering ugh........ I am interested in the daily enema routine that Tammy has posted about. Can you let me know what type you use? Would love to have a routine that I could actually make some type of plans so would my husband and friends. Thanks in advance!

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PGLGreg
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Joined: Sat Nov 04, 2006 12:38 am
Location: Waimanalo, HI

Re: Lower Anterior Recestion Syndrome: Do you have it?

Postby PGLGreg » Mon May 02, 2016 11:29 am

b29vince wrote:Are there doctors who specialize in this? It would seem that if (as one statistic I read) 60-90% of LAR patients have LARS this might be a good field to spend some time in.

Of the doctors I've had, my radiation oncologist knew most about all this.

I guess I have a mild form of LARS. The greater frequency of bowel movements the oncologist explained to me as having a straightforward, mechanical explanation. My rectal tumor was 5cm above the anal verge, which is pretty low, so the surgeon had to remove most of my rectum. What remains won't hold as much, so it has to be emptied more frequently.
Greg
stage 2a rectal cancer 11/05 at age 63
LAR 12/05 with adjuvant radiation+5FU,leucovorin 1-2/06
NED for 12 years, cured

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Jacques
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Location: Occitanie

Re: Lower Anterior Recestion Syndrome: Do you have it?

Postby Jacques » Tue May 03, 2016 12:49 am

chrisca wrote:
laneylou wrote:...
I am a bit of an evangelist about this, because it was such a big deal for me - the penny that finally dropped and fixed I would say 85% of my reversal issues,and all the ones that were causing me the most distress. Bile acid diarrhea is underrecognized in general. There's no test for it in the US, if you have the symptoms you just try a bile acid sequestrant and see if it helps.

Here's a link to an article about bile acid diarrhea - if this sounds like you and you've had radiation, ask your surgeon/GI/onc about it. You never know if might help.

The link didn't work. Could you please check into it and repost if you can find it? Thanks.



Is this the link?
Bile Acids: An Underrecognized and Underappreciated Cause of Chronic Diarrhea
https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2014/06/Parrish_Oct_12.pdf

Bile acid sequestrant
https://en.wikipedia.org/wiki/Bile_acid_sequestrant

Colesevelam
https://en.wikipedia.org/wiki/Colesevelam

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chrisca
Posts: 246
Joined: Wed Dec 07, 2011 10:35 pm
Location: Portland, Oregon

Re: Lower Anterior Recestion Syndrome: Do you have it?

Postby chrisca » Tue May 03, 2016 3:32 am

Yes, those are the links, and thanks. I visited my GI specialist and he prescribed a trial of cholestyramine. It didn't work out though. I had rectal pain, increased frequency, and even longer BMs. So I guess bile acid malabsorption isn't my problem. We're back to square one again.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 10 years

sam i am
Posts: 3
Joined: Mon Sep 05, 2016 2:12 pm

Re: Lower Anterior Recestion Syndrome: Do you have it?

Postby sam i am » Mon Sep 05, 2016 2:24 pm

tammylayne wrote:Yes...I have this, but I have known about it for a while. I did the quiz and got a 41 : (

I have been doing a daily enema for the past 10 months because of this...and my life is pretty near perfect now...at least when it comes to managing my LARS. 30 minutes every morning and I am good to go for 24 hours about 99% of the time. MUCH better then when I was trying to manage the LARS, nothing seemed to work for me. I was going 20 - 30 times most days.

My surgeon diagnosed this, although I always believed it to be real....VERY real.

My surgeon's nurse told me about doing enemas as well but she said to do it at night before going to bed. I wonder if it makes a difference? It took me the longest time to even try this. But even after I did it, I would still feel very gassy and felt the urge to go. I have not made this a routine but I should. I really have no life. At least half the day I'm in the bathroom. I am anxious to go anywhere far from home. I would like to PM but being new I can't.

Joecool1983
Posts: 44
Joined: Sat Jun 11, 2016 12:45 pm
Facebook Username: Joseph Piazzola

Re: Low Anterior Resection Syndrome: Do you have it?

Postby Joecool1983 » Wed Sep 07, 2016 3:46 pm

I had surgery back in April. Coming up on 4 months post surgery. I have been having bad LARS symptoms. I go from being extremely painfully constipated, to having bad stool fragmentation/clustering and going to the bathroom 20 times a day, to on my chemo/FOLFOX weeks and when I take stool softener, getting extreme diarrhea.
Diagnosed 12/17/15- 32 years old- Tumor 3"x1.5" at the Rectosigmoid Colon
Stage IIIA T3N1M0
Radiation and chemotherapy(Xeloda pill form) January 2016- February 2016
4/11/16- Surgery to remove the tumor/colon resection. Robotic LAR/Dissection of Lymph Node. 1/19 showed any involvement
5/16-10/16- Follow up chemotherapy- FOLFOX, 8 Treatments
1/17- Routine CT scan found 3 Metastases on my Liver
4/17-8/17- 5 Treatments Avastin/Irinotecan

sam i am
Posts: 3
Joined: Mon Sep 05, 2016 2:12 pm

Re: Low Anterior Resection Syndrome: Do you have it?

Postby sam i am » Thu Sep 08, 2016 12:59 am

Joecool1983 wrote:I had surgery back in April. Coming up on 4 months post surgery. I have been having bad LARS symptoms. I go from being extremely painfully constipated, to having bad stool fragmentation/clustering and going to the bathroom 20 times a day, to on my chemo/FOLFOX weeks and when I take stool softener, getting extreme diarrhea.

That must be extremely hard, having to deal with lars and folfox simultaneously. I don't know how I would've managed that! I had chemo first, then radiation followed by surgery. What happens if you skip the stool softener during chemo (if you're clustering then)?


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