Low Anterior Resection Syndrome: Do you have it?

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heiders33
Posts: 286
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Mon Jan 15, 2018 11:26 am

FRIDGIE wrote: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.


I totally agree. All my oncologist and surgeon ever talk about is curing me. I never heard of LARS either until I came to this forum. I'm hopeful that I'll eventually have some control after my reversal. I know there will be frequency, and that will probably never go away. But I can live with that if I have control.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

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susie0915
Posts: 847
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Mon Jan 15, 2018 11:47 am

This is true. All they tell you is to take Metamucil/Citrucel, and it takes time. I went to a bowel control clinic at University of Michigan about a 15 months after surgery. This is not the hospital I was treated at, and I found it by accident online looking for solutions. The staff there was very helpful. The doctor ordered a couple tests Anorectal manometry, and defacography, which measure the strength of your sphincter muscles, and how well you are able to hold stool. He also ordered pelvic floor therapy and meeting with a dietician.

His recommendations based on my tests were to take miralax daily, enemas, or suppositories. The goal was to empty my bowels at one time to avoid running to and from the bathroom all day. The pelvic floor therapy was helpful, as the therapist does stretch you colon to help hold more stool. The dietician had me try a low roadmap diet. It is restrictive, but did help me figure out what foods may be an issue.

My problem like many was clustering not so much diarrhea. I had to do an tap water enema for one of the tests and felt pretty good all day. I have been doing them daily since. I felt the miralax would loosen my stool and I would not know when I would need to go. With a daily enema I can be done in 30 minutes and I empty enough of the lower bowel to last until the next morning. And it is done on my timetable. Since doing them, I can eat pretty much what I want and when I want. I have stopped taking any meds (citrucel, questran, immodium, lomotil, etc) and my bottom feels better. I have also been able to gain some of the weight back that I lost during treatment, not to mention the stress of always worrying about an issue to arise. When I told my surgeon I went to the clinic and what I was doing he was fine with it, but didn't ask me many questions. When I met with my survivorship counselor she thought it was a great idea and was going to recommend to other patients

It would be helpful if colorectal surgeons had more answers or at least a staff that is educated and willing to think outside the box. The Ostomy nurses are great, there needs to be more help for those without a rectum but no stoma. Some do really well without a lot of help, but the change in our anatomy will cause issues. There has to be more than just take Metamucil and give it time.

If the University of Michigan has a bowel control clinic, maybe there are other hospitals that do as well.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Aqx99
Posts: 403
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Facebook Username: aqx99
Location: Pfafftown, NC

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

Postby Aqx99 » Mon Jan 15, 2018 7:08 pm

I am already impressed with the pelvic health center associated with my hospital. After talking with me for a while, the physical therapist examined me (old me would have been a bit put off by that, not anymore) to see how strong my muscles were. After that we discussed how she is going to teach me techniques to help induce bowel movements, thereby allowing me to plan ahead of time. She didn't give me much information today because she needs to wait for my ileostomy to be reversed and healed some so she can show me the massage technique she was telling me about.
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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susie0915
Posts: 847
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Mon Jan 15, 2018 8:04 pm

Aqx99 wrote:I am already impressed with the pelvic health center associated with my hospital. After talking with me for a while, the physical therapist examined me (old me would have been a bit put off by that, not anymore) to see how strong my muscles were. After that we discussed how she is going to teach me techniques to help induce bowel movements, thereby allowing me to plan ahead of time. She didn't give me much information today because she needs to wait for my ileostomy to be reversed and healed some so she can show me the massage technique she was telling me about.

That's awesome Anne. Being proactive like that is necessary to prepare you and help with issues that may arise. I was happy with my surgeon and the help I received while in had my ileostomy even though it wasn't long. Just after reversal I saw the GI in the same office and he basically said take citrucel and give it time. I'm sure you will do great. Until I had cancer I never realized how many people suffer from bowel issues in general.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

PT for LARS

Postby O Stoma Mia » Tue Jan 16, 2018 12:50 am

Aqx99 wrote:I am already impressed with the pelvic health center associated with my hospital. After talking with me for a while, the physical therapist examined me (old me would have been a bit put off by that, not anymore) to see how strong my muscles were. After that we discussed how she is going to teach me techniques to help induce bowel movements, thereby allowing me to plan ahead of time. She didn't give me much information today because she needs to wait for my ileostomy to be reversed and healed some so she can show me the massage technique she was telling me about.

It's good that you are starting on this before your reversal. Did the physical therapist actually take a measurement of the strength of your muscles? There is an instrument called a "manometer" that can give an actual number reflecting the strength of the sphincter muscles. There are also biofeedback sensor devices thst can give an indication of the level of electrical activity in your muscles when you squeeze your sphincter as much as possible. If they take these physical measurements now, you will have a baseline for comparison as you proceed onward with your therapy program.

Physical therapy for LARS has been discussed here on this forum several times in the past, for example, this thread:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=56790&p=449075#p449075

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

Re: PT for LARS

Postby Aqx99 » Tue Jan 16, 2018 5:45 am

O Stoma Mia wrote:
Aqx99 wrote:I am already impressed with the pelvic health center associated with my hospital. After talking with me for a while, the physical therapist examined me (old me would have been a bit put off by that, not anymore) to see how strong my muscles were. After that we discussed how she is going to teach me techniques to help induce bowel movements, thereby allowing me to plan ahead of time. She didn't give me much information today because she needs to wait for my ileostomy to be reversed and healed some so she can show me the massage technique she was telling me about.

It's good that you are starting on this before your reversal. Did the physical therapist actually take a measurement of the strength of your muscles? There is an instrument called a "manometer" that can give an actual number reflecting the strength of the sphincter muscles. There are also biofeedback sensor devices thst can give an indication of the level of electrical activity in your muscles when you squeeze your sphincter as much as possible. If they take these physical measurements now, you will have a baseline for comparison as you proceed onward with your therapy program.

Physical therapy for LARS has been discussed here on this forum several times in the past, for example, this thread:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=56790&p=449075#p449075


She did not use a device to measure my muscles. She was trying to be as gentle as possible because she could see how fragile my tissue is. She had me squeeze and relax multiple times in various patterns while her finger was inserted. Even with just that, there was blood.
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

teachpdx
Posts: 612
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

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

Postby teachpdx » Tue Jan 16, 2018 9:36 pm

Anne, has your PT suggested going through your vagina to get to pelvic floor muscles? I actually delayed my reversal for the pelvic floor PT because it was so effective. Also I don't think any type of PT can go through the anus - the tissue is too compromised. Any exam etc causes me to bleed. Too much pooping causes me to bleed.

Good luck. 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!

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 » Tue Jan 16, 2018 9:55 pm

teachpdx wrote:Anne, has your PT suggested going through your vagina to get to pelvic floor muscles? I actually delayed my reversal for the pelvic floor PT because it was so effective. Also I don't think any type of PT can go through the anus - the tissue is too compromised. Any exam etc causes me to bleed. Too much pooping causes me to bleed.

Good luck. Kristi


Her exam was through my vagina. I had damage to my vagina during my LAR. My surgeon accidentally punched a hole in it while scraping my rectum off of it. So I have issues in both openings.
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

teachpdx
Posts: 612
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

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

Postby teachpdx » Wed Jan 17, 2018 6:57 pm

Aqx99 wrote:
Her exam was through my vagina. I had damage to my vagina during my LAR. My surgeon accidentally punched a hole in it while scraping my rectum off of it. So I have issues in both openings.


I'm so sorry - that really sucks. I feel like recovery from rectal cancer does not receive near as much attention as is needed. Also, treatment side effects for men and women is very different. We've got like three doctors for one area: surgeon, urologist, gynecologist and proctologist? Who does what? I had a complete hysterectomy and wonder who sees to my anus/anastomosis? Don't see my surgeon anymore, new insurance???
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!

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 » Wed Jan 17, 2018 8:26 pm

teachpdx wrote:
Aqx99 wrote:
Her exam was through my vagina. I had damage to my vagina during my LAR. My surgeon accidentally punched a hole in it while scraping my rectum off of it. So I have issues in both openings.


I'm so sorry - that really sucks. I feel like recovery from rectal cancer does not receive near as much attention as is needed. Also, treatment side effects for men and women is very different. We've got like three doctors for one area: surgeon, urologist, gynecologist and proctologist? Who does what? I had a complete hysterectomy and wonder who sees to my anus/anastomosis? Don't see my surgeon anymore, new insurance???


My radiation oncologist was the one who gave me the vaginal dilator to use, yet she has released me from her care. Nobody is actually checking it to make sure it is working. It can be very frustrating.
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

Phillypatient
Posts: 16
Joined: Sun Aug 05, 2018 11:28 am

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

Postby Phillypatient » Sat Aug 11, 2018 11:06 am

Having been 8 months out from a reversal surgery, I am starting to understand this as a mechanical issue. Even my oncologist agreed...it doesnt get better, you just adapt better. If you don’t have the organ that stores the waste until it reaches a critical mass, what do you think will happen...many trips to the bathroom. Also, solutions like limiting fruits and vegetable are effective because the have fiber, but it that really a good solution? Eating more processed low fiber foods? Fruits and vegetables are the foods that have the most anti cancer properties...so you are trading one problem for others down the road. You could argue this is the trade off you make for a solution to this disease...hard unfortunate reality I suspect.
My LARS has remained the same or gotten worse quite honestly. If I need a break from the toilet I just don’t eat for a couple of days. Just my honest assessment
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

ams5796
Posts: 2286
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Sat Aug 11, 2018 1:25 pm

Phillypatient,

I'm not sure if you're on facebook, but there's an extremely supportive and helpful group on there for LARS. Just type Living with Low Anterior Resection Syndrome in the search bar. Lots of great information and solutions on there for us. The most "popular" solution seems to be daily warm water enemas. Lots of folks consider the implementation of those to be nothing short of a game changer. It really has given many of us our lives back.
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: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Aug 11, 2018 2:11 pm

My sister and a co-worker (suffering from MS) both suggested I go to a bowel clinic or therapist and I think I need to do this. I would rather do it locally but I think that I'd do better finding one in Boston.

My surgeon told me that she thinks that I'll be able to do well but she said that she could do a colostomy if it didn't work out. So I think that she does understand that it is difficult.

I was considering writing something up about my difficulties in the hospital or something more along the lines of how to manage after a reversal in the hospital.

Surgical options:
Sacral nerve stimulation is a minimally invasive technique that stimulates nerve roots for improved sphincter function.
Sphincteroplasty repairs the muscles of a weakened anal sphincter by stitching them more tightly together.

Some of the non-surgical options:

Biofeedback
Bowel training
Kegel exercises
Injectables
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; 9/8: 1.8; 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
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

ams5796
Posts: 2286
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Sat Aug 11, 2018 5:37 pm

Another non surgical option is a daily warm water enema. It's probably what the professionals would suggest.
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: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Aug 11, 2018 5:45 pm

ams5796 wrote:Another non surgical option is a daily warm water enema. It's probably what the professionals would suggest.


I'm considering this. Anyone with a paper describing detailing the known solutions?
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; 9/8: 1.8; 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
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


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