Biofeedback and PT for LARS

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tarheelmom
Posts: 168
Joined: Mon Mar 07, 2016 5:55 pm

Biofeedback and PT for LARS

Postby tarheelmom » Thu Dec 29, 2016 2:51 pm

So I am 6 months out from my reversal, and I would have to say that I have full blown LARS. It is manageable, but it certainly has an impact on my activities. My surgeon has suggested biofeedback from a physical therapist trained in motility. He says that it is usually quite successful. I start next week. Has anyone tried this? I'm not sure what to expect.

Also my surgeon informed me that he is leaving to take a position in a very distant medical center. My care is being handed off to one of his colleagues, but I feel like the new guy has no skin in the game, so to speak. I remember specifically asking my surgeon who would be responsible for my care for the next 5 years, particularly if I had LARS type issues. He was so reassuring about creating long term relationship with his patients and being responsible for the outcome of his work. I just didn't figure in the fact that he might relocate. :( Sigh, the only constant is change ...
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

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Green Tea
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Re: Biofeedback and PT for LARS

Postby Green Tea » Fri Dec 30, 2016 2:50 pm

tarheelmom wrote:So I am 6 months out from my reversal, and I would have to say that I have full blown LARS. It is manageable, but it certainly has an impact on my activities. My surgeon has suggested biofeedback from a physical therapist trained in motility. He says that it is usually quite successful. I start next week. Has anyone tried this? I'm not sure what to expect....


I have not tried this, but I see that it is one of several approaches for dealing with fecal incontinence. Do you know what your exact LARS diagnosis is? In other words, which particular muscles or structures are in need of re-education -- the sphincter? the pelvic floor muscles? or what? What is the underlying cause of your symptoms?

http://www.stmarksmedicalcentre.co.uk/Library/Conditions/Articles/incontinence-bowel/treatment

MissMolly
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Location: Portland, Ore

Re: Biofeedback and PT for LARS

Postby MissMolly » Fri Dec 30, 2016 6:26 pm

As a physical therapist myself by profession, GreenTea has given you excellent points for you to discuss with your physical therapist during your consultation visit(s). That said, the process of defecation is actually quite complex from a neuromuscular standpoint. The rectum can become easily closed-off by positional deficits and by inappropriate opening/closing of the anal sphincters that are not in synch with the defecation process.

A defogram is often a valuable diagnostic tool. In a defogram, barium that is as thick as paste is infused into the rectal vault. You are then asked to sit on a toilet that has built-in fluoroscopy capability. Electrode sensors are placed both internally and externally to measure muscle contractility in real-time as well as to record sphincter relaxation and closure. The defogram gives an accurate real-time assessment of the defecation process and is an excellent tool in identifying functional problems in the process.

Discuss with your PT if owning a Squatty Potty would be of benefit to you. Squatting places the pelvic floor and rectum in ideal alignment for defecation. Modern toilets are not conducive to optimizing the defecation process.

If you have occasional bowel leakage, I know of no finer personal care product than the Butterfly® anal leakage pad. The Butterfly pad is shaped like a butterfly and has adhesive that sticks lightly to the skin. The pad is placed in the crease of the buttocks. Easy peezy. For anyone with occasional bowel leakage, the Butterfly pad is truly liberating. I was forever trying to place a menstral pad in my under ware as my procotocolectomy and anal wound was healing. But the pad was forever shifting and falling out of place. Then I tried the Butterfly® anal leakage pad. It was like finding the impossible. No more messy mucus discharge to content with. I felt like I had my personal dignity back. I love the Butterfly pads.

Butterfly anal leakage pads are available on Amazon. I have not seen them in any local pharmacy or retail store.

If you have not tried the Butterfly® anal leakage pad, I highly highly recommend them. These pads provide a discrete solution to the personal distress of anal bowel leakage. It needs to be nominated for product-of-the year award.
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

tarheelmom
Posts: 168
Joined: Mon Mar 07, 2016 5:55 pm

Re: Biofeedback and PT for LARS

Postby tarheelmom » Fri Dec 30, 2016 9:33 pm

GreenTea and Miss Molly

Thanks for the replies. I have several Squatty Pottys (they were at Costco) scattered around my house. Because I no longer have a rectum or sigmoid colon (nor do I have a pouch), I think my anatomy of elimination is very funky. My issue seems to be an inability to empty. While I am occasionally incontinent (usually at night), the primary issues are urgency and clustering. I'm guessing that my muscles are just not trained to empty the reconfigured colon. I can go up to 20-30 times in a 24 hour period and still feel full. I've tried various combinations of Miralax and Metamucil. I haven't hit the optimum combination - yet. Actually Miralax does absolutely nothing for me. I can practically drink a whole bottle of it and still poop out just a baby carrot-sized turd ... :)
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

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Green Tea
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Re: Biofeedback and PT for LARS

Postby Green Tea » Mon Jan 02, 2017 11:24 am


tammylayne
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Re: Biofeedback and PT for LARS

Postby tammylayne » Tue Jan 03, 2017 9:51 pm

I hope that you are able to find a solution to your LARS. As a fellow sufferer, I understand what you are going through. I also was frequently going 25 to 30 times in a 24 hour period. No way to live. If at any point you would like to learn about the daily enema as a fix, please send me a PM. For the past 3 years it has been my answer. 30 minutes every morning from start to clean up and I am BM free for a minimum of 24 hours...I even skip a day here and there. I have my life back and I am happy to share the details.

Best of luck to you no matter what...we all deserve to live a quality filled life!
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
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Location: Portland, OR

Re: Biofeedback and PT for LARS

Postby teachpdx » Wed Jan 04, 2017 1:20 pm

Recovering from an LAR takes a VERY long time & requires a ton of patience. Everyone's body is different & we all respond differently to the trauma of surgery/treatment.

I found Immodium to be a life saver - helps slow down the gut to allow more time for more water to get absorbed. I also find that eating meals and not grazing is helpful for NOT clustering. I have almost no clustering when I eat meals vs grazing. Also limiting the amont you drink with your meals can help.

I also had pelvic pt and it was a life safer. Best of luck with your recovery.
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!

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Green Tea
Posts: 451
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Re: Biofeedback and PT for LARS

Postby Green Tea » Mon Jan 09, 2017 9:53 am

teachpdx wrote:... I found Immodium to be a life saver - helps slow down the gut to allow more time for more water to get absorbed. I also find that eating meals and not grazing is helpful for NOT clustering. I have almost no clustering when I eat meals vs grazing. Also limiting the amount you drink with your meals can help...

I think this is probably true. The MD Anderson article quoted below gives the following recommendations (among others) for achieving better control of bowel movements

Transit Time of Food Through the Gastrointestinal Tract
Eating a large meal or drinking a hot liquid will cause a normal peristaltic
push down in the gastrointestinal (GI) tract. When frequent bowel
movements occur, drink less fluid with your meals, drink more fluids
between meals, and avoid hot liquids...

Fluid: Fluid with meals tends to increase peristaltic pushdown.
So, drink fluid in between meals instead of a large amount
with meals and avoid hot liquids.

Ref: http://www.lowrectalcancer.com/Bm%203.pdf

tarheelmom
Posts: 168
Joined: Mon Mar 07, 2016 5:55 pm

Re: Biofeedback and PT for LARS

Postby tarheelmom » Wed Jan 11, 2017 11:19 pm

Thanks for the tips on grazing vs. eating a meal. I tend to be a grazer so I'm going to try to eat a full meal and see if that helps with the clustering.
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

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BeansMama
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Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Biofeedback and PT for LARS

Postby BeansMama » Thu Jan 12, 2017 2:17 am

So sorry about the issues you are having TarheelMom. I am sorry I have no advice but I am sending extra thoughts and prayers your way.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

AussieAssCancer
Posts: 258
Joined: Sat May 21, 2016 10:16 am

Re: Biofeedback and PT for LARS

Postby AussieAssCancer » Thu Jan 19, 2017 4:31 am

Like Beans, I have no advice, but was grateful for the question, as well as the various advice offered, as I am scheduled for my reversal in 4 weeks.

Hoping you find a satisfactory 'normal' soon Tarheelmom

:D
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

Ladytot
Posts: 5
Joined: Sun Feb 05, 2017 11:33 pm

Re: Biofeedback and PT for LARS

Postby Ladytot » Mon Feb 06, 2017 1:25 am

I had an ultra low anterior resection reversal done in August 2016. Since then I have been battling to even be able to leave the house because of LARS symptoms. I have now found a dietary regime that works for me and have no problems at all. Sugar, wheat, alcohol, many vegetables and fruits, fat , lactose and legumes are all diarrhoea triggers so I have eliminated them completely. It's actually not as bad as it sounds...it's just like being back in the 50s eating plain protein and simple carbs. If anyone would like to know the details, I would be glad to share.

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Green Tea
Posts: 451
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Re: Biofeedback and PT for LARS

Postby Green Tea » Mon Feb 13, 2017 4:18 am

tarheelmom wrote:... My surgeon has suggested biofeedback from a physical therapist trained in motility. He says that it is usually quite successful. I start next week. Has anyone tried this? I'm not sure what to expect...

So, how did your biofeedback session go? Did they measure your muscle strength at baseline? If so, how does it compare to the normal level for pelvic-floor/sphincter muscle strength?

Did they say how many sessions it would take to see some improvement or to reach normal muscle strength?

tarheelmom
Posts: 168
Joined: Mon Mar 07, 2016 5:55 pm

Re: Biofeedback and PT for LARS

Postby tarheelmom » Tue Feb 14, 2017 2:36 am

Well it's 2:30 am, and I am sitting on the toilet for the 7th time tonight so empirically the PT hasn't completely resolved the LARS symptoms. The initial session indicated that I had weak pelvic floor muscles that were in a perpetual state of contraction. I've been working on both strengthening and coordinating the pelvic floor and abdominal muscles. Although symptoms have not disappeared, I do have more control and more effective elimination. So overall I am hopeful to continue to improve. I don't really have a problem with diarrhea- clustering, frequency, and incontinence have been my issues. I can eat almost anything with the exception of green beans and Brussels sprouts. Those seem to really bother me. So overall not perfect but improving.
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

Rich.P
Posts: 3
Joined: Wed Mar 08, 2017 11:20 am

Re: Biofeedback and PT for LARS

Postby Rich.P » Wed Mar 08, 2017 4:38 pm

Hi all,

I found this site by looking for info and help for my Lars, I had my reversal 14 months ago now and one of my main problems is that as soon as I eat I have to use the bathroom, sometimes I'm only 3 bites into my meal and I'm running and as we know it's sure a drag when you don't make it. I have to do any errands in the morning before I eat because after I eat my day changes and I don't get out much after that. I have used loperamide lots to shut things down to make late day appointments and not eaten until supper time which sucks for an ex foodie.
Learning things from reading other posts, thanks for all the interesting info, I know you all understand.
Rich.P


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