Low Anterior Resection Syndrome: Do you have it?

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ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Sat Aug 11, 2018 6:01 pm

There are so many great threads on this forum detailing everything you would want to know. There is also an informative, supportive LARS board on Facebook.

viewtopic.php?f=1&t=60383&p=479250&hilit=daily+enema#p479250
Last edited by ams5796 on Sat Aug 11, 2018 6:21 pm, edited 1 time in total.
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Aug 11, 2018 6:05 pm

ams5796 wrote:There are so many great threads on this forum detailing everything you would want to know. There is also a informative, supportive LARS board on Facebook.

viewtopic.php?f=1&t=60383&p=479250&hilit=daily+enema#p479250


I know as I've read about them over the past year. It would be considerable work going over all of those threads looking for solutions though.

I went to sign up for Facebook to join that board and they want too much personal information for my tastes. I was hoping that someone could just type in a top ten or twenty list off the top of their head. Or that they have the information in a more organized format such that they can pull it easily. I will start such a file myself [I create dropdown lists on my homepage with hyperlinks].
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

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Sat Aug 11, 2018 6:30 pm

I'm confused as to what you mean when you say "solutions." Doing a warm water enema could not be easier. It's simply filling an enema bag that you'd buy on amazon or at a drug store with warm tap water. There are instruction on the box and all over the internet including this forum.

http://www.enema-information.com/simple-enema.html
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Aug 11, 2018 6:39 pm

ams5796 wrote:I'm confused as to what you mean when you say "solutions." Doing a warm water enema could not be easier. It's simply filling an enema bag that you'd buy on amazon or at a drug store with warm tap water. There are instruction on the box and all over the internet including this forum.

http://www.enema-information.com/simple-enema.html


Exercises, physical therapy, electro-stimulation, everything that may be useful.

I have an enema bulb at home which I have been reluctant to try out because I don't know if things back there are quite the same. I'll ask the surgeon about it next week.

I've also asked my sister (Autoimmune Aplastic Anemia) who she uses for bowel PT and another friend with MS who she uses.
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


NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Aug 12, 2018 3:08 pm

O Stoma Mia wrote:
NHMike wrote:... I was hoping that someone could just type in a top ten or twenty list off the top of their head...

Here are 10 links to start with...
  1. https://www.massgeneral.org/pelvicfloor/treatments/
    .
  2. https://www.semc.org/services-directory/imaging-radiology/diagnostic-imaging-center/digital-radiography-fluoroscopy/defecography
    .
  3. https://www.nwh.org/surgery/surgical-specialties/colorectal-surgery/diagnostic-and-screening-testing#High%20Definition%20Anorectal%20Manometry
    .
  4. https://www.nwh.org/surgery/surgical-specialties/colorectal-surgery/diagnostic-and-screening-testing#Defecography
    .
  5. https://www.brighamandwomens.org/patients-and-families/rehabilitation-services/physical-and-occupational-therapy-rehabilitation-services
    .
  6. https://www.tuftsmedicalcenter.org/patient-care-services/Departments-and-Services/Pelvic-Floor-Program
    .
  7. https://flourishphysicaltherapy.com/pelvic-and-orthopedic-health/faq/
    .
  8. https://www.exeterhospital.com/Services/Outpatient-Rehabilitation-Services/Pelvic-Floor-Rehabilitation
    .
  9. https://www.medicinenet.com/fecal_incontinence/nashua-nh_city.htm
    .
  10. https://www.elliothospital.org/website/elliot-rehabilitation-specialty-programs-pelvic-floor-women-health.php


I had already had a look at a few of these - one thing that I find about hospital informational sites is that they are often partially marketing sites as well. It seems like my basic question is difficult to answer or there are other issues. I'm going to try an academic approach as it looks like there's a fair amount of material out there in research-land.

Thanks for the list.
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

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sun Aug 12, 2018 3:27 pm

I am currently on Round 6 (of 8) Folfox chemo. Then I will do radiation and then surgery. When I have my surgery they are removing my rectum and "fashioning a neo/new rectum" for me out of part of my colon. (Removing my uterus too as the tumor is invading.)

Is this a Low Anterior Resection? If not, what is it called? (Is this a J Pouch?)

(I am trying not to think too much about what my life will be like after surgery - as I still have a ways to go until then and I'm trying to take things one day at a time - but the outstanding and educated people on this forum always remind me that we patients can't afford to merely go along blindly with what we are told. We must be armed with information and ask questions. So, I guess I need to start thinking about surgery and research when I have the energy to do so.)

Thank you very much.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

Phillypatient
Posts: 43
Joined: Sun Aug 05, 2018 11:28 am

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

Postby Phillypatient » Sun Aug 12, 2018 11:19 pm

Sounds like you are doing the induction treatment approach. Full chemo first, then chemo rad, then surgery. Lower anterior resection can involve the removal of the rectum, sigmoid colon and a small part of the colon. In your case, it sounds like the rectum primarily. The “neo rectum”/jpouch is up for debate among surgeons. The docs at MSK and Penn don’t use them and studies have shown mixed results with a jpouch

By the way, your treatment plan is part of the approach taken by some highly regarded centers that are trying to help avoid the surgery. Below is a quick summary of the study led by doctors at MSK. Also, some members on this board have followed the “watch and wait” plan

https://www.mskcc.org/clinical-updates/ ... ut-surgery

Maybe you will have a complete response and have the option of avoiding surgery.
Good luck with your treatment and continue asking questions.
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

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

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

Postby ozziej » Mon Aug 13, 2018 9:27 am

Hi NHMike,
I'm now 3 years out from reversal of a temporary ileostomy after ULAR. I have major LARS as defined by the LARS score tool (Emmertsen et al). As someone who was a researcher in a pre RC life, I have trawled through the academic literature on LARS and its treatment. Here's what I can tell you. There have been almost zero RCTs conducted re treatment, so there is no real evidence base. The small amount of studies is of very poor quality. As an indicator of where things are at, there is an international consortium led by a NZ team which is aiming to establish an evidence-based definition of what constitutes a dx of LARS, in the hope that this will be standardized in research so apples are not being compared with oranges. There are currently small studies being conducted re use of irrigation. The Facebook LARS support group now has over 500 members. This is my summary of options to try that have been distilled from my reading of the literature and the anecdotal experience of group members over the past 12 months.
The most promising treatment is irrigation (enemas). This is possibly because evacuation difficulties are emerging as an important feature of LARS. Previously there was a greater focus on incontinence, so medication such as loperamide or lomotil was at the top of the armory. Diet plays a part but very few people manage on diet modification alone. As well, diet is such an individual, trial and error experience. SNS has been found to be helpful where there is incontinence but less helpful for one of the dominant symptoms, clustering. Support for fibre supplements is mixed, with some finding improvement and others finding exacerbation of symptoms. Pelvic floor exercises are also helpful for incontinence, however many LARS patients report having the opposite problem, and have found pelvic relaxation techniques helpful. Pre and probiotics also have mixed support. Some people (including myself ) have used stool softeners to achieve the same aim as the enema, ie. Reduce the stool to a state where it can be easily evacuated. For those who experience tenesmus, amitriptyline/nortriptyline have provided relief. Various medications have helped somewhat with excessive gas. Pain relief methods include barrier creams, hot water baths, topical creams, medications and relaxation techniques. There are no 'solutions', only management techniques. I am aware of 2 members who have opted for a permanent colostomy, and several who are actively considering this step. The longest a member has been dealing with LARS is 21 years, with many having several years' experience of living with LARS.
The good news is that the clinical and research communities are finally acknowledging that LAR (and especially ULAR) carries a significant risk of developing LARS, especially if the patient has also been irradiated and/or had a temporary ileostomy for longer than 6 months. Hopefully with a common definition and standardized measurement tools we will start to see an evidence base emerge for treatment options.
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!! : )

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Mon Aug 13, 2018 11:20 am

Excellent summary, ozziej. Thank you for getting that all down in writing. This will be a great help to many.
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

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

Postby O Stoma Mia » Mon Aug 13, 2018 2:25 pm

ozziej wrote:... As an indicator of where things are at, there is an international consortium led by a NZ team which is aiming to establish an evidence-based definition of what constitutes a dx of LARS, in the hope that this will be standardized in research so apples are not being compared with oranges. ...

Thanks, ozziej, for providing information about the NZ team. It would be nice to have a standardized definition of LARS. It would also be nice if all rectal cancer patients were thoroughly informed about LARS at the time of signing the Informed Consent document prior to their rectal surgery.

https://www.ncbi.nlm.nih.gov/pubmed/28612460

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

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

Postby ozziej » Mon Aug 13, 2018 5:41 pm

Mia,
I totally agree that informed consent is vital. I do think that at the time we are being asked to make the decision to have a resection our thoughts are often 'just get the cancer out' and we may not fully take on board the ramifications. If the consequences of a resection are played down and portrayed as a little extra time on the loo then we are set up for major disappointment. It is a fine line between fully informing and scaring the patient. My idea of how it should go is this: Step 1. Inform patient of dx and treatment options (with a detailed evidence based showbag of info to take home for further reading, including late effects and QOL impacts of each option). Step 2. Then have a Q&A session with the patient followed by thinking time. At this point the POLARS should be administered to provide the patient with an estimate of the likelihood of LARS in their particular case. Step 3. If APR chosen, refer to stoma nurse. If LAR/ULAR chosen, refer to LAR nurse (don't exist but should). If watch & wait chosen then refer for support. Step 4. If having a resection with no diverting stoma, then assess for LARS using a standardized tool at 4 weeks post surgery. For a diverting stoma, readminister POLARS prior to reversal. This gives patient option to choose permanent colostomy if risk of LARS is unacceptable. Post stoma reversal, assess for LARS at 4 weeks. Referral then to a multidisciplinary team of LARS nurse, physiotherapist, gastroenterologist, dietitian, psychologist. LARS nurse should be trained to teach irrigation. Ah well, I can only dream..
For NHMike, you may find the following youtube clip helpful. I'm hopeless at links but the name of the clip is: Managing post-operative LAR syndrome and the presenter is Dr Tonia M. Young-Fadok.
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!! : )

Phillypatient
Posts: 43
Joined: Sun Aug 05, 2018 11:28 am

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

Postby Phillypatient » Mon Aug 13, 2018 9:20 pm

O Stoma Mia and ozziej, you have most likely summed up the feelings I suspect most people who have had a Lower Anterior resection feel. Why didn’t anyone tell me exactly how bad it could be? Why didn’t anyone tell me how life altering and debilitating the surgery could be. These were my exact sentiments I mentioned to my oncologist...how could neither you nor the surgeon spend even 2 minutes discussing the after effects. At least the oncologist did say the university is enacting a watch and wait protocol.
Again, great summary
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

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O Stoma Mia
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Location: On vacation. Off-line for now.

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

Postby O Stoma Mia » Tue Aug 14, 2018 12:49 am

Thanks to ozziej:

Managing Post-Operative LAR Syndrome
http://www.youtube.com/embed/toAI30sSGSE/?rel=0&autoplay=1
Last edited by O Stoma Mia on Tue Aug 14, 2018 8:56 am, edited 1 time in total.

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

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

Postby ozziej » Tue Aug 14, 2018 2:15 am

Thanks for your help Mia.
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!! : )


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