Low Anterior Resection Syndrome: Do you have it?

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

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

Postby Joecool1983 » Wed Dec 14, 2016 12:34 pm

So, 8 months removed from surgery. Biggest problem is still the stool fragmentation. I went to the bathroom 21 times yesterday.
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

DarknessEmbraced
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Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

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

Postby DarknessEmbraced » Thu Dec 15, 2016 11:00 am

I scored 31. My tumor was at the junction of the sigmoid and rectum. In 2014 I had half of my sigmoid and half of my rectum removed. I alternate between many small bms a day(clustering), to constipation, to diarrhea(sometimes solid stool followed by diarrhea or vice versa), get severely bloated fairly often, have lots of smelly gas that can be hard to control, urgency, get rectal spasms sometimes, lots of cramping/pain. I had ischemic colitis(lack of blood flow to the colon) in January. Since then I've had much more of a problem with cramping and pain. I get the cramping in my abdomen and lower back. The worst pain is usually on the lower left where my colon was reattached. I can't use metamucil when I'm constipated because it just causes me much more cramping and gas. My GI says IBS because colonoscopy/endoscopy with biopsies were normal. My yearly ct scans were normal. He said to try bran buds but no matter how small amount I try they cause the same cramping and gas as metamucil so I'm stopped trying them. Raisin bran in small amounts seems to help more with less cramping. I tried lax-a-day(same as miralax) but even very small amounts give me diarrhea right or more cramping/gas then diarrhea later on. I can't take dulcolax for the same reasons. I see my GI on December 22nd. He wants to try a very low dose anti-depressant for pain but I don't want to try an anti-depressant because of having a hard time tapering off of prednisone. I have dilaudid and tylenol with codeine leftover from prior hospital admissions for pain. Even when I was on a liquid diet in the hospital I still had cramping, bloating and pain. The other night I had an a bad accident while sleeping. That used to happen a lot after my surgery until I was put on dicetel(pinaverium bromide), an anti-spasmodic 3 times a day. The dicetel doesn't stop all the cramping but I'm much worse without it. I try not to take the narcotics for pain because they cause constipation. I use heat which helps sometimes. I only take the narcotics if nothing else is helping which is rarely. I keep a food/symptom diary to try to find patterns. I avoid the major gas causing foods such as broccoli, cabbage, cauliflower, beans, onions, eggs. and many others. I wish there was a doctor around here who specialized in LAR syndrome. There are only two GI's here. The other GI works in the same office as mine. I was hoping things would be better 2 years out but it seems to keep getting worse.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Jeanee
Posts: 1
Joined: Thu Jul 23, 2009 2:42 pm

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

Postby Jeanee » Mon Jun 26, 2017 12:22 pm

I have LARS and have lived with it for 7 years. I have started a group on Facebook for support. Please join if you would like to..

https://www.facebook.com/groups/786555674854989/

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

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

Postby Swirdfish » Mon Jun 26, 2017 8:24 pm

I couldn't find the link, but I had ULAR surgery (no rectum and sigmoid) end of last year. Its been a few months for me now, but this forum helped me greatly. I'm basically normal if I follow my routine, and can eat basically anything. I find that the Metamucil is the biggest contributor to giving me normalcy, and the codeine and Imodium just slows me down so much, for water absorption. Yes I do get slightly constipated, but for me it is a better alternative. If I don't slow it down and introduce fibre, then out it comes quiet quickly.

Does anyone else use Codeine? I think also using this is you have to be careful of addictions.

There is only 3 times I've lost it, because I was too lazy to follow my routine.

Everyone is different by what I've read in the previous posts, but this is what works for me.

Wish you all well, and pooping the pants in public is never a good thing. Blame the guy beside you.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

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Jacques
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Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

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

Postby Jacques » Tue Jun 27, 2017 2:21 am


ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

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

Postby ozziej » Tue Jun 27, 2017 3:34 am

Hi Jeanee
I have LARS too and would like to join your Facebook group. However I can't get the link to work and I have tried searching for LARS or Low anterior resection syndrome with no luck. What is the name of your group?
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!! : )

JudiB
Posts: 71
Joined: Sun Mar 05, 2017 5:30 am

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

Postby JudiB » Wed Jun 28, 2017 9:39 am

I was surprised to see my score was 36!
My tumour was at the junction if the sigmoid colon and rectum so a section of each was removed. I didn't have an ileostomy.
I have days when I don't go but more when I am back and forth, never seeming to evacuate fully. On "busy" days I get lots of sharp pains in the rectum and cramping higher up. I hadn't realised that so many folks have these issues so long time after surgery. My surgeon said they will pass after time and I also thought maybe the chemo is making it worse as I can see cycles. Diet does have an effect...the more fruit and veg I ear, the worse it is! I refuse to stop eating healthy stuff so maybe it's my fault!
I am trying to be positive and hope it will get easier after the chemo us over.
May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Jan 2017 resection around colo-rectal junction
T2bN1 M0
March 2017 Chemo Folfox started. Oxaliplatin for 4 treatments, then just 5 FU and Leucovorin for remaining 8 treatments.
June 2017 clear scan
Last chemo August 2017
August 2017 clear scan
February 2018 clear scan

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Jacques
Posts: 579
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

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

Postby Jacques » Thu Jun 29, 2017 2:11 am

JudiB wrote:.... I hadn't realised that so many folks have these issues so long time after surgery. My surgeon said they will pass after time ...

My surgeon said the same thing. That was 4 years ago, but my bowel issues still haven't gone away completely.

What I would suggest is for you to start right now with some sort of program to deal with your particular manifestation of LARS.

Here is an article on sphincter exercises and pelvic floor exercises. The article also has lots of information on how food choices affect LARS, as well as other useful tips.

4 Essential Steps to Overcoming Bowel Incontinence & Bowel Leakage
https://www.pelvicexercises.com.au/bowel-incontinence/
.
Image

delemur
Posts: 13
Joined: Fri Dec 08, 2017 10:54 pm

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

Postby delemur » Fri Dec 08, 2017 11:12 pm

I just took this test. My results indicate No LARS. Is that a good indicator that the current symptoms I'm experiencing are only temporary? My reversal surgery was just completed on 11/27/17 so I'm fresh in recovery from the surgery. Here are my results:

00 = No Flatus
00 = No leakage
04 = Bowels open more than 7x per day
11 = Bowels open within one hour of last opening more than once per week
00 = Never have to rush to toilet
15 = Total

I know there's really no way to no for sure, but I'm trying think positive and stay hopeful. The fragmentation is depressing already.

Thanks.
- Sex: Male
- DX Age: 41
- Tumor Location: Proximal = 9 cm; Distal = 1.5 cm
- Tumor Type: Adenocarcinoma
- Tumor Size: 1.7 x 1.2 x 0.8 cm
- Tumor Grade: G2: Moderately differentiated (intermediate grade)
- Stage: IIIB
- Positive Lymph Nodes: Yes
- Radiation + Chemo: 03/16/17 - 29 days / 3000mg Capecitabine
- Surgery: 05/16/17 - LAR & Diverting Ileostomy
- Chemotherapy: 06/16/17 - 62 Days CAPOX / 56 Days FOLFOX
- Surgery: 11/27/17 - Ileostomy Reversal

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susie0915
Posts: 945
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Sat Dec 09, 2017 10:05 am

delemur wrote:I just took this test. My results indicate No LARS. Is that a good indicator that the current symptoms I'm experiencing are only temporary? My reversal surgery was just completed on 11/27/17 so I'm fresh in recovery from the surgery. Here are my results:

00 = No Flatus
00 = No leakage
04 = Bowels open more than 7x per day
11 = Bowels open within one hour of last opening more than once per week
00 = Never have to rush to toilet
15 = Total

I know there's really no way to no for sure, but I'm trying think positive and stay hopeful. The fragmentation is depressing already.

Thanks.

It can get better. I tried many things for about a year. My issues were not leakage or diarrhea it was clustering. I could go to the bathroom many times and only evacuate a little at a time. I went to a bowel control clinic and the doctor recommended daily enemas, suppositories, or maybe taking miralax every day to get a full evacuation at one time. I did a tap water enema for one of the tests he ordered and felt good all day. He said I could do them daily if I wanted. It has been great. I have been doing them for about 10 months and my life as changed tremendously. It takes about 30 minutes in the morning and I'm good until the next morning. I don't have to take immodium anymore, I am not afraid to eat, my bottom feels better, and just my mental state of not worrying about it when I go out. I have total control of when. It has changed my life. You are early in the game and may find you will do fine. Everyone has to find what works for them and can fit into their lifestyle. Give it time and see how it goes, just know there are options and people here that can help if you have issues down the road.
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

delemur
Posts: 13
Joined: Fri Dec 08, 2017 10:54 pm

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

Postby delemur » Sat Dec 09, 2017 11:25 am

Thanks for the reply. So it sounds like you would have passed the test, but your one symptom, clustering, never went away, correct? That's a bummer.

Based on what I've read I'm going to give it 6 months. If I don't see any natural improvement I will start looking into solutions (Biofeedback, Pelvic Floor Therapy, Imodium, Metamucil, etc.). I have read the posts about enemas. They do sound liberating, but I'd prefer to use them as a last resort.
- Sex: Male
- DX Age: 41
- Tumor Location: Proximal = 9 cm; Distal = 1.5 cm
- Tumor Type: Adenocarcinoma
- Tumor Size: 1.7 x 1.2 x 0.8 cm
- Tumor Grade: G2: Moderately differentiated (intermediate grade)
- Stage: IIIB
- Positive Lymph Nodes: Yes
- Radiation + Chemo: 03/16/17 - 29 days / 3000mg Capecitabine
- Surgery: 05/16/17 - LAR & Diverting Ileostomy
- Chemotherapy: 06/16/17 - 62 Days CAPOX / 56 Days FOLFOX
- Surgery: 11/27/17 - Ileostomy Reversal

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Sat Dec 09, 2017 12:51 pm

delemur wrote:Thanks for the reply. So it sounds like you would have passed the test, but your one symptom, clustering, never went away, correct? That's a bummer.

Based on what I've read I'm going to give it 6 months. If I don't see any natural improvement I will start looking into solutions (Biofeedback, Pelvic Floor Therapy, Imodium, Metamucil, etc.). I have read the posts about enemas. They do sound liberating, but I'd prefer to use them as a last resort.

I understand. Yes I would've passed the test. Just the clustering, but was so restrictive, as I could be in and out of the bathroom for hours. I tried the Metamucil, immodium, diet. etc. I even followed the MD Anderson bowel management program. You may want to look that up online. I also did pelvic floor physical therapy which think was helpful. I met with a dietician as well. The enemas can be intimidating at first, but with some practice are quite simple. Doing them daily makes the process much easier as stool doesn't build up in the lower bowel and make it difficult to administer. I agree you should see how you do the next 6 months, many do well naturally. Depends how much rectum you have left too. Most of mine is gone. I have accepted enemas work for me and my doctors approve. Many people with permanent colostomies irrigate instead of wearing a bag ( I have a friend who does this), the enema is basically the same concept just administered at the rectal area instead of a stoma. Good Luck. I'm sure you will do fine.
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

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FRIDGIE
Posts: 1
Joined: Mon Dec 25, 2017 7:33 pm

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

Postby FRIDGIE » Mon Jan 15, 2018 12:24 am

Its been a couple of months since surgery. I felt like I was bullied into it... no wait and see or support to find alternatives. :(
The surgeon told my children I would die if I didn't have surgery. I had no time to find out more... however tumours like mine can take 5-10 years to develop. Lots unecessary panic, fear and stress during diagnosis> prognosis weeks.
Today is the first time I have heard of the LARS abbreviation. The real consequences of surgery were not explained not known either?... only the scientific assumptions of not having immediate surgery. ( no one keeps statistics on remissions or successful science based drug /surgery fre cures do they? Surgeons don't really care what happens to you after the surgery... they're thinking about their social standing and holidays.
They are arrogant enough to think they've cured you (especolly the one I had :evil: ).
I supposed that problems would resolve a few months afterwards .. I really wasnt given enough info. before and was really appalled to read a how long issues are suffered after surgery when I discovered this site in Dec.
I've read that seratonin and 5HTP can help nerve transmission. ....resection surgery removes not just a percentage of the colon which function is adjust the preparatory consistency of stool, and sometimes removes much of the rectum which temp. holds/shelves faeces prior to evacuation - it also removes and disturbs colorectal nerves which I've read are more numerous than around the spinal cord... so impulses to the brain to pass wind/stool are affected.
I still have post surgical neuropathy.. kind of half numb and half pain around nethers and left buttock, which not one nurse of doctor could advise me about!
Its lessening but taking a long healing time, despite a couple months of homeopathic Calendula, Arnica & Hypericum 200c...
Fortunately pathology was clear, so no chemo, which I read does further and perm. damage to bowel & sphincter function.

I'm seeing a GP tmr. I will ask about enemas, psyllium husk, dietition and biofeedback exercise. Don't want any more (opiate/drying) drugs - Post-surgical constipation was worse than childbirth!
I found high dose vit C, (ascorbic acid & MSM powder), helped as a laxative with healing benefits.

(I was trialling high orthomolecular dosages of of Vit C & B3 earlier in the year to help with inflammation and osteoarthritis problems).
Vit C is not a spasmodic laxative - works by drawing more fluid into the colon. (Also taken with magnesium is a reccommended natural laxative solution for IBS problems). But since the surgery I've found I'm now unable to take the therapeutic doses of ascorbic acid & MSM I would like because of colon replumbing. :( (I was able to tolerate a needed 3x 1000mg doses ascobic acid per day)... maybe i can try taking psyllium along with it? &/Or trying a buffered ascobate or more expensive lyposomal fom of vit C?

Fed up with wearing pads and fearing public embarrasment. Hours on the loo... I bought a cushioned toilet seat!.. Being
woken up by bowel urge and accidents... not being able to eat healthy, raw ,(anti cancer) veggies/salads..gas bloating etc
The thought of this going on for years and never really resolving depresses me.
I feel like my body has been mutilated with no.consideration for my wish to try other solutions

Doing pelvic floor 2/3× day was instinctive after the ensuing continence probs of childbirth ...it's helping a bit.

No one has mentioned (Bentonite or other) clay which has other benefits to just firming up stool . I am about to try it and will post again if its helpful.
(NB Should be taken seperately from any probiotics or will limit/prevent their absorption in the GI tract). 1 tspn-tablespoon recommended in juice before

White rice/ rice noodles, buckwheat, oat porridge, pearl barley, any potatoes help prevent diarrhea . (I generally avoid meat, dairy and wheat)... Limiting dietary protein to bone broth, tofu, little eggs and fish to minimise acidity. Veg and fruit like bananas, mangos, nori, avocados are better than leafy /cruciferous greens.
I dare not eat dried fruit or beans :roll:
DIAGNOSIS: PT3 N0 MX; DUKES B22
R0 RESECTION; LYMPH GLANDS FREE OF TUMOUR.
(JUL. 2017 dark blood/mucus in stool; AUG. coincidental invitation for postal bowel screening tests; SEPT. Tumour found during colonoscopy @ Rectal/Sigmoid junction; removed by Laparoscopy 31 OCT17 - no stoma no further treatment).

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O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Mon Jan 15, 2018 9:42 am

FRIDGIE wrote:...Today is the first time I have heard of the LARS abbreviation. The real consequences of surgery were not explained not known either...
I supposed that problems would resolve a few months afterwards .. I really wasn't given enough info. before and was really appalled to read a how long issues are suffered after surgery when I discovered this site ...

Your experience is quite similar to mine. In fact, I did not hear about LARS until I ran across the term on this forum about a year after I had finished all of my rectal cancer treatments.

Neither the surgeon nor the oncologist had ever mentioned anything about it.

In my opinion, there is a serious shortcoming in the way that rectal cancer patients are typically treated. Specifically, the 'standard of care' for rectal cancer patients is far too narrowly defined. It needs to also encompass the treatment of surgery-induced disorders, radiation-induced disorders as well as chemo-induced disorders.

Typically, what you find is that surgeons are not interested in things like LARS, fecal incontenance, etc. They are only interested in doing more surgery.

Similarly, oncologists are not interested in your problems either unless the problems can be solved by more chemo or more radiation.They will likely refer you to a dietician or to the nursing staff if you are having trouble with your bowels.

The way I look at it is that there is a huge deficiency in the Informed Consent Procedure in the case of rectal cancer patients. The surgeons and oncologists do not properly or fully inform rectal cancer patients of what they are getting themselves into by signing the consent form.

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

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

Postby Aqx99 » Mon Jan 15, 2018 11:01 am

I'll have to revisit this thread after my reversal. I'm seeing the pelvic floor specialist today. Hopefully she will help me avoid some of these issues.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy


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