Low Anterior Resection Syndrome: Do you have it?

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nkoske
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Location: California

Low Anterior Resection Syndrome: Do you have it?

Postby nkoske » Fri Feb 28, 2014 12:35 am

I was mowing through scientific papers last night and ran across this one:
Bowel dysfunction after rectal cancer treatment: a study comparing the specialist's versus patient's perspectivehttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3902194/#!po=6.25000

Conclusion: Docs really don't know what its like...there's a shocker. With that said 78% were CRC Surgeons and 22% Rad Oncs. I bet if they had Med Oncs the numbers would have been closer as they interface with patients much longer.

It has this little test:
Image

Thought it might be kind of fun to take the test. Why don't we say how far from the verge the tumor was then answer the questions. May help the unfortunate new members what to expect from LAR surgeries. I'll start.

Tumor 10-15cm from verge

Question 1: Yes, at least once a week. Although I was pretty damn 'windy' before cancer. 7
Question 2: No, not since I've been of Chemo. 0
Question 3: I'm averaging about 1.6 BMs per day for the last 15 days...yes I have the data...what can I say I'm a nerd. 0
Question 4: Yes, happened on Monday but not a weekly occurrence. 9
Question 5: I'd say Yes, less than once a week for sure. I think it's my fault when it happens as it seems diet related, but I guess pre-cancer Nick didn't have these issues. 11

Total: 27

I guess I have minor LARS. I'll take it...really not that bad and I can probably control the numbers with diet better. Beans seem to equal 'wind' and my new plumbing is unable to hold it back. C'est la vie.
Nick, DX @ age 34, IIIB Rectal Cancer 10/2012
ChemoRad IMRT 11/2012
Laparoscopic LAR 1/2013 (No Ileo)
Post Surgery Path IIIB (2/15 LN)
Chemo 2/2013 (XelOx)
Currently NED, Graduated from Med Onc 10/2017

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Fri Feb 28, 2014 12:48 am

...AND when you finish the quizz ... there is a paper which is an auto download PDF from this site
for further info ...
Best wishes
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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

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

Postby tammylayne » Fri Feb 28, 2014 2:22 pm

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.
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."

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juliej
Posts: 3114
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Re: Lower Anterior Recestion Syndrome: Do you have it?

Postby juliej » Fri Feb 28, 2014 3:02 pm

I came out "no LARs." :D

I wish we knew what caused it, why so many of us are so different, and why there is no pre-surgical indication of who will have problems and who won't. My colorectal surgeon is very sensitive to bowel dysfunction symptoms. He regularly questions me about urgency, clustering, and continence at my 6-month sigmoidoscopies, but even he seems amazed that I'm not having any problems. So if he can't tell, who can?
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

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

Postby BrownBagger » Fri Feb 28, 2014 3:40 pm

I came out with no LARS, too, but I do have a regular problem with night-time bowel incontinence. Not a lot of volume, but more than your typical skid mark. I'm pretty sure it's directly related to chemo. I just wake up and--yuk, did it again. I've taken to wearing shorts over my underwear on nights when I suspect it's going to happen. I'd say that's 2-3 nights per 2-week chemo cycle. I should probably wear Depends, but you know, I'm just not ready to go down that road just yet.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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

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

Postby lauragb » Fri Feb 28, 2014 7:50 pm

I would say without enemas I would be positive for LARs, except I don't have the runny leaky bowel. I just don't go.............................at all, and then..................clustering for hours. Even using enemas I do get gassy but like BMs the gas likes to build up and come out long winded like what I left behind me in a grocery store aisle yesterday.

Anyway, I've recently heard the term Pelvic Radiation Disease which has many of the same symptoms plus the other not-fun stuff. So call it what you will, low rectal cancer treatment wreaks havoc on the nether parts.

By the way, my tumor was very low....
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

AnnieW
Posts: 5
Joined: Fri May 03, 2013 2:41 pm
Facebook Username: Annie Wanzyk

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

Postby AnnieW » Sat Mar 01, 2014 9:52 am

Tammylayne, could we email privately? I have tried everything, including daily enemas, ended up with diarrhea, for this.
I can't sleep, I can't get dressed before 12, I defecate constantly. More fiber makes larger movements, but still constant, every 1/2 hour. My surgery was June of 2012, I am tired of waiting for improvement and have contacted my surgeon to discuss colostomy. I can not live like this any longer. I am on Percocet, bentyl, immodium, and the going keeps on going.
I am very limited to what I can eat. I used the fleet enemas, I read where that might not be the best choice. I am sitting on the toilet as I write this, it's ridiculous, I am told learn to live with it,what? Constant gas, I try to make jokes about it, but it's sorta like the pie in the face joke, it's funny until it's your face. I need to find help, some days it will not stop, I am going to make a diary with pictures to show my Dr. I had my rectum and part of colon removed, with direct hook up.
This is not living. My tumor was very low, I was told a colostomy would be needed but of course fought that, that was before I knew about living like this. I will give daily enemas one more try
Thank you for listening to me grip, I try to stay positive, but as I head into the bathroom yet again, :(

Annie
Annie, central Ohio
rectal cancer 12/2012
6 weeks 5 fu and radiation
surgery 6/2012
8 weeks 5FU and Oxaliplatin

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

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

Postby lauragb » Sat Mar 01, 2014 10:25 am

Annie,
I see you are from Ohio. I am too. I am sending you a PM.
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

laneylou
Posts: 97
Joined: Tue Oct 09, 2012 8:25 pm

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

Postby laneylou » Sat Mar 01, 2014 11:53 am

Well, I don't have a rectum any more (super low, coloanal anastomosis) so yeah, I do have LARS by these definitions. BUT - I can manage it pretty well.

Obviously not having a rectum has its issues - like we don't have that rectal reflex anymore that lets you think "not now" and damp down the urgency, rather than just having to consciously hang on with the sphincters. I also think that in those who've had radiation, that set of issues can synergize with those directly related to the surgery which can aggravate the situation.

In my case I have bile acid malabsorption and diarrhea associated with radiation enteritis. Basically the transporters in the terminal ileum get a bit wrecked by radiation (and possibly ileostomy surgery) and can't do their job of reabsorbing bile acids. (Same kind of thing with vitamin B12 transporters is probably why some of us get B12 deficient after radiation.) Bile acids are very irritating to the colon and if enough of them make it past the terminal ileum, it can cause really bad diarrhea. My radiation oncologist did a good job getting my small intestine out of the radiation field (I didn't have many enteritis symptoms during radiation or on chemo), but because the terminal ileum is "fixed" to the beginning of the colon, it does get some radiation, typically.

It's pretty clear this is what I have - without medication (Welchol, a pill with a polymer that absorbs bile acids) I have horrible urgency and sludgy, hard-to-control stool after meals (sometimes even during) especially with higher fat foods. Because I have a harder time controlling soft/liquid stool now thanks to the LAR, this is a recipe for disaster! With the Welchol, and a bit of Metamucil for extra bulk, I usually have comfortable, essentially normal stools about twice a day. For me it is MAGIC. My surgeon caught on first and gave me a trial for Prevalite (a powdered product, nasty to take) which worked great, and then my GI switched me to the Welchol which is so much nicer. You do have to take these products well away from your other meds (if any) as it theoretically could affect absorption of other drugs/vitamins.

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.
Laine, dx @ 39, 4/12
T3N0M0 Stage IIA
Emergency IVF, 4/12
Chemorad, LAR/temp ileo, FOLFOX (no oxi after #2)
DVT on chemo; IVC filter
Reversal/port out 5/13
IVC filter finally out 2/14
NED (clean CT, scope, CEA)

b29vince
Posts: 1
Joined: Tue Mar 15, 2016 12:24 pm

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

Postby b29vince » Tue Mar 15, 2016 12:48 pm

Hi,

@lauragb, I have a similar issue. I had my LAR w/ ileostomy in Jan 2014 an my reversal in March 2014. Pretty quick and everything seemed to be healing fine.

However, similar to you, instead of having many BMs like most mention, I just seemed to never go at all. It was so bad I was hospitalized for what that they thought were blockages several times. However tests show no blockages.

We have tried Fiber, softeners, laxatives. probiotics, and even Linzess. Nothing seems to work. I will go 5-7 days between BM's. Obviously it gets uncomfortable and I get self conscious as my stomach gets larger. None of the treatments seem to work. Laxatives cause unpredictable results and Linzess has the effect of uncontrollably evacuating the system, so I use that only when I absolutely have to.

I usually just live with the 5-7 day cycle as it seems to offer the most control and QOL options. However when that day does come, my life gets turned upside down and I basically have to stay home and indoors. There are also usually large volumes of gas at the same time.

I am curious if you or others reading this have also had similar issues and what you have found effective or how you have been able to cope and make the best of it?

My surgeon has washed her hands of it (at around 8 months post-op) and basically told me its not a surgical issue. My regular GI really has nothing more to say since we have tried the approaches I mentioned.

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.

Just looking for some ideas.

Thanks,
- Vince

lauragb wrote:I would say without enemas I would be positive for LARs, except I don't have the runny leaky bowel. I just don't go.............................at all, and then..................clustering for hours. Even using enemas I do get gassy but like BMs the gas likes to build up and come out long winded like what I left behind me in a grocery store aisle yesterday.

Anyway, I've recently heard the term Pelvic Radiation Disease which has many of the same symptoms plus the other not-fun stuff. So call it what you will, low rectal cancer treatment wreaks havoc on the nether parts.

By the way, my tumor was very low....

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

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

Postby tammylayne » Tue Mar 15, 2016 2:38 pm

Hey Vince...PM me if you would like to know more about the daily enema and give it a try...sounds lik you have nothing to loose and possibly everything to gain...
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."

Rebequita
Posts: 18
Joined: Fri Jul 10, 2015 6:54 pm

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

Postby Rebequita » Tue Mar 15, 2016 5:37 pm

My reversal is scheduled for sometime in April, and reading this thread makes me nervous. Any advice for me going in to this? Things to expect or discuss with my surgeon?
6/15 Diagnosed RC Stage IIIb at age 38
7/15 Neoadjuvant Radiation and Xeloda
10/15 Lower Anterior Resection and temporary ileostomy; tumor shrunk to "in situ" and removed with clean margins; 0/19 nodes positive for cancer
11/15 Began 6 rounds of Oxaliplatin infusion/oral Xeloda
12/15 Negative for Lynch
3/16 NED
4/16 Ileostomy reversal
8/16 NED

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 » Tue Mar 15, 2016 8:10 pm

I got a 34 and LARS never came up in any appt I had with any doctor. Nice of them to take care of us. I'm managing now mostly by eating almost ALL of my meals at home and baking (homemade graham crackers, banana bread, etc.) so I have homemade carbs to absorb any improper foods - like soup, oatmeal, peppers or onions). I am more apt to go out for dessert rather than a full meal so I don't have to worry about running to the bathroom and - rinse and repeat :shock:

Peace, Kristi
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!

shade
Posts: 162
Joined: Thu Feb 20, 2014 7:08 pm

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

Postby shade » Tue Mar 15, 2016 8:17 pm

Rebequita,

People have different outcomes. Many achieve a high QOL fairly quickly, others have continuing trouble. Hopefully you will do fine after your reversal. There are many factors that affect outcome: how low they went with your LAR, whether you had radiation, how long you had an ilio, and who knows what else. The main thing I would suggest is to ask your surgeon NOW what kind of post surgical care you will receive. Ask how they help patients with post surgical bowel issues. Let them know you desire and expect post surgical care.

My surgeon displayed little interest in helping me adjust to post-reversal problems. His practice has little to offer patients with LARS. This is surprising because he specializes in ultra low anterior resections, and his promotional material touts how many people they have saved from permanent colostomies. After my reversal, they sent me home with a little brochure, told me to take some fiber supplements, and wait it out. My efforts to get help from his practice when I had continuing problems were an exercise in poor doctor-patient communication (actually nurse-patient, since my surgeon is well buffered by his mid-level staff).

Again, maybe things will turn out well for you, and none of this will be an issue. But in the event that you do have some LARS problems, you will already have an idea of how they plan on helping you. Having a strong relationship with your surgeon is key. Best of luck. I am hoping you won't have any major reversal problems and will quickly regain a high QOL.
Stage IV rectal
10/12 Cancerous polyp removed age 51
6/14 uLAR and resected liver met
12/14 finished FOLFOX / Avastin
1/15 ilio reversed = LARS!!!
1/20 onc said “cured!” - no further monitoring unnecessary
5/21 chest pain revealed new lung mets… radiation
10/21 maintenance avastin/xeloda
9/22 stivarga 2 weeks, d/c'd due to foot pain
10/22 vectabix + irinotecan

Jachut
Posts: 1137
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

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

Postby Jachut » Wed Mar 16, 2016 2:16 am

b29vince wrote:Hi,

@lauragb, I have a similar issue. I had my LAR w/ ileostomy in Jan 2014 an my reversal in March 2014. Pretty quick and everything seemed to be healing fine.

However, similar to you, instead of having many BMs like most mention, I just seemed to never go at all. It was so bad I was hospitalized for what that they thought were blockages several times. However tests show no blockages.

We have tried Fiber, softeners, laxatives. probiotics, and even Linzess. Nothing seems to work. I will go 5-7 days between BM's. Obviously it gets uncomfortable and I get self conscious as my stomach gets larger. None of the treatments seem to work. Laxatives cause unpredictable results and Linzess has the effect of uncontrollably evacuating the system, so I use that only when I absolutely have to.

I usually just live with the 5-7 day cycle as it seems to offer the most control and QOL options. However when that day does come, my life gets turned upside down and I basically have to stay home and indoors. There are also usually large volumes of gas at the same time.

I am curious if you or others reading this have also had similar issues and what you have found effective or how you have been able to cope and make the best of it?

My surgeon has washed her hands of it (at around 8 months post-op) and basically told me its not a surgical issue. My regular GI really has nothing more to say since we have tried the approaches I mentioned.

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.

Just looking for some ideas.

Thanks,
- Vince

lauragb wrote:I would say without enemas I would be positive for LARs, except I don't have the runny leaky bowel. I just don't go.............................at all, and then..................clustering for hours. Even using enemas I do get gassy but like BMs the gas likes to build up and come out long winded like what I left behind me in a grocery store aisle yesterday.

Anyway, I've recently heard the term Pelvic Radiation Disease which has many of the same symptoms plus the other not-fun stuff. So call it what you will, low rectal cancer treatment wreaks havoc on the nether parts.

By the way, my tumor was very low....


Yes, I did have similar issues. I started off pretty normal - ie. urgent and loose but never uncontrollable, for 9 months or so. They it began to get more and more difficult. I just couldn't not pass stool unaided. I pushed and I strained and I went 3 days between bm's. We *think* radiation damage scarred up my pelvic tissues, the pouch was found to be fibrotic and couldn't expand, nor did it have any normal peristaltic movement. Then I kept pushing so hard that it prolapsed and closed itself off.

My surgeon didn't really believe me I don't think - he thought I was neurotic and depressed and failing to make a good recovery emotionally. FINALLY, after wasting time with dieticians and pelvic physiotherapists he sent me for a defecating proctogram which showed the problem straight away. I had colostomy surgery a mere two weeks alter - I'd made up my mind months before that that was what I wanted. I've never looked back. I cannot see the sense in trying to make poor bowel function manageable. It takes over your life, causes constant anxiety and controls what you can and cant do. I am not interested in enemas or medication, tried it, hated it. I peel and stick a bag on once or twice a day, end of story. I barely think about it.


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