LARS. Any tips?

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Bianca10
Posts: 119
Joined: Thu Jun 29, 2023 4:46 pm

LARS. Any tips?

Postby Bianca10 » Tue Sep 19, 2023 1:58 am

Hey everyone
Just looking for any pointers on how to alleviate spending too much time sitting on the toilet and fighting the sudden urges!!

Seems to be no real pattern we can link it too (booze, fatty spicy food)
Partner doesn’t love taking the loperamide so wondering if anyone could advise possible alternatives for some respite.
Interestingly we just bought a very slow juicer and we’ve both been having fruit/veggie juices the past 2 days and you could say that’s triggered it, but I also made a chicken noodle soup with fatty stock two nights ago so hard to pin it down.

We just came back from France where we drank pretty conservatively every evening and no real issues at all strangely. We always assumed booze was the biggest trigger.
Also have him on a lot of supplements…

Any advice very welcome!! X

Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: LARS. Any tips?

Postby Rock_Robster » Tue Sep 19, 2023 2:26 am

Have you looked into tap water enemas? Literally gave me my life back when I had more severe LARS after my reversal. I found I could generally get 24 hours (at least) bathroom-free after doing an evening enema.

https://livingwithlars.com/warm-water-enemas/

Now I can largely get by with 2x (4mg) loperamide before every meal, and strategic intermittent fasting where needed (eg if I have a morning presentation or flight).
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev

L0729
Posts: 75
Joined: Sat Mar 26, 2022 4:40 pm

Re: LARS. Any tips?

Postby L0729 » Tue Sep 19, 2023 5:46 am

I have found that no specific food triggered lars. Some days the same food you’ve eaten with no issues causes you issues. I had the lars managed very well after two months reversal with the addition of Metamucil and Imodium before each meal and limiting eating after 5 pm. There were days of intermittent fasting when I wanted to go places without worrying about getting to a toilet.
Irrigation will be what I try next, as I’ve had to go back on chemo (folfiri) and with the lars I’m back at square one with very painful bms and early days reversal symptoms. I had a low rectal tumor and radiation so I believe radiation proctitis is the culprit.
As I’m sure you’ve read the lars does get better with time for most people and the irrigation sounds to be a huge help, I will be trying it as I’m really suffering with lars and chemo right now. You may also want to try lomotil for clustering but it is constipating for me.
2/22 - Dx stage 4 rectal cancer T4 4cm, 1cm from AV - age 60
EMVI + MSS 2 liver mets 2.1 cm and 1cm
Kras G12V, TP53, RAD51D
3/22 3 Folflox 6 1w/o oxi.
6/7 - Liver resection, liver abaltion
7/7 28 days chemoradiation
10/26 - LAR, temp. ileo. (1/9 nodes, partial response - T3, moderately diff)
12/22-2/23 4 Folfox at 50%
4/3 - Reversal
3/8 scan clear, monitoring lung nodules
6/29 scan, new liver 3cm met, 3 lung nodules increasing, susp. subcarinial lymph node

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: LARS. Any tips?

Postby Claudine » Tue Sep 19, 2023 10:32 am

Hi Bianca, I hope you had a great time in France! It's now been a year since DH's reversal, so what it is is likely to be what it will be.
He's eating and drinking what he wants, because food and wine are such a joy for him, and there doesn't seem to be anything specific that will trigger bad episodes. If you don't already have one, I would HIGHLY recommend a bidet. We installed a rather fancy one and DH can do warm water enemas daily; it's been working really well for him.
Another thing: his rectal surgeon recommended that he takes 20-25mg of soluble fibers daily, so for months, DH gobbled Metamucil gummies. But while we were in France this summer, he reached a point where he just couldn't fathom eating one more, so he completely stopped, and... His LARS suddenly got way better! He's always got Imodium with him, just in case, but overall I'd say he's able to live a fairly normal life, and people who do not pay close attention don't notice anything :)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

Bianca10
Posts: 119
Joined: Thu Jun 29, 2023 4:46 pm

Re: LARS. Any tips?

Postby Bianca10 » Tue Sep 19, 2023 11:19 am

Hi all,
I’m not sure if there is a way to tag usernames so you can see who I’m directing to but thanks so much for all of your comments.
Really interesting about the enemas but is that because of constipation?? In my partners case his is more the sudden urges to go and then soft stools/being on the toilet for quite a while!
Will also look at the gummies and I will encourage taking more loperamide when needed!

Claudine, so sorry to hear of your husbands new little pest that’s cropped up, but glad it is just that and can see you’re already full steam ahead in getting opinions etc sorted!

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: LARS. Any tips?

Postby Claudine » Tue Sep 19, 2023 11:48 am

Really interesting about the enemas but is that because of constipation?


No! It's the opposite. Doing the enemas helps empty the colon/rectum, so one doesn't need to be on the toilet for hours.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: LARS. Any tips?

Postby Claudine » Tue Sep 19, 2023 11:50 am

Claudine, so sorry to hear of your husbands new little pest that’s cropped up, but glad it is just that and can see you’re already full steam ahead in getting opinions etc sorted!


Thanks Bianca, sometimes it's hard to keep up the fight (it's been 5+ years already), DH is always waiting for "the other shoe to drop" and keeping a positive attitude can be challenging, but we're trying hard :)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

Bianca10
Posts: 119
Joined: Thu Jun 29, 2023 4:46 pm

Re: LARS. Any tips?

Postby Bianca10 » Tue Sep 19, 2023 12:00 pm

Thanks Bianca, sometimes it's hard to keep up the fight (it's been 5+ years already), DH is always waiting for "the other shoe to drop" and keeping a positive attitude can be challenging, but we're trying hard :)


I completely understand, we’re only just under 2 years of this fight and just as we bounce back from one surgery the next scan shows something else which of course isn’t good and the last consent form stated palliative. We’re so young tooo, so our future has kinda been taken from us (new jobs/potentially kids).
I have a feeling your husband will be alright :)
He’s done great so far and it sounds like maybe the biology isn’t so aggressive! Hang in there! You’ve got this!

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: LARS. Any tips?

Postby Claudine » Tue Sep 19, 2023 1:01 pm

He’s done great so far and it sounds like maybe the biology isn’t so aggressive! Hang in there! You’ve got this!


Aww thank you you're so sweet! It is true that DH's cancer isn't particularly aggressive; it's just... Relentless, we feel like we're playing a game of whack-a-mole, but that's not uncommon with this disease.
I can totally relate with your feelings (I'm sure everyone here can), of having been robbed of a future - now that we're empty nesters, there was so much we were planning to do! But, we still can, and so can you. It seems especially unfair when it hits young people, but life isn't particularly fair (many people in the world would agree). I hope you can find the strength, and aggressive oncological/surgery team, to keep forging ahead XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: LARS. Any tips?

Postby Rock_Robster » Tue Sep 19, 2023 1:17 pm

Claudine wrote:
Really interesting about the enemas but is that because of constipation?


No! It's the opposite. Doing the enemas helps empty the colon/rectum, so one doesn't need to be on the toilet for hours.

Spot on! For me it was mainly about dealing with the frequency / clustering and urgency.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev

User avatar
chrisca
Posts: 246
Joined: Wed Dec 07, 2011 10:35 pm
Location: Portland, Oregon

Re: LARS. Any tips?

Postby chrisca » Wed Sep 20, 2023 5:02 pm

None of these are miracles, but they have helped me. I still have issues with long BM times and soft, fragmented stools but not as bad as before.

Get some Pentasa from your doctor. I have titrated the best dose for me to 250 mg and use it when having a bad day, along with Imodium if needed. It helps a lot to settle down excessive cramping and urgency. Some people can take Pentasa long-term. I tried, but it caused pain near the gallbladder after about a week of use. But for a day or two, it was fine and really helped by reducing inflammation in the gut.

Be careful when using constipating drugs such as Imodium. If they work too well, they cause the gut to back up and then it will get angry and empty out eventually, resulting in a very bad day or multiple days. Cycling back and forth between bad LARS and calm days isn't a good situation for me so I save the Imodium for situations where I need to be out of the house or symptoms that are especially bad.

Sugar alcohols are present in a lot of processed foods and some fruits. They can cause big problems. Look for sorbitol, mannitol, maltitol, erythritol, and xylitol on labels. Avoid them. Stone fruits such as peaches, plums, cherries, and nectarines have it, also sweeter kinds of apples and pears, but it can vary by variety. I've found some I can eat, others, no way. Look up the "FODMAP diet" for ideas on how to limit these.

After chemo, the gut can develop allergies to some foods. I found I can't eat quinoa anymore, sweet pickled red peppers, or chipotle peppers. It can take a while to figure out by elimination of foods then adding back one at a time.

SIBO (small intestine bacterial overgrowth) is a condition where gut bacteria colonize the small intestine. It revs up LARS like crazy. You can get a breath test for it you can do at home, send samples to a lab and they mail you the result. But it's usually not covered by insurance. It can be speculatively treated with herbals that aren't too expensive and if symptoms improve you can take the herbals every few months if symptoms return. SIBO can't be cured, it usually recurs after several months. But repeated treatments bring it back under control. An antibiotic treatment is also available but it can be pricey in the US. See https://journals.sagepub.com/doi/epdf/1 ... j.2014.019 for more details on the herbal treatments. I ended up using Candibactin AR and Candibactin BR every 4-6 months, and it helps quite a bit.

Some drugs can aggravate LARS. I found that ED drugs in the PDE-5 class (Cialis, Viagra, etc.) are murder on the gut. Also, an eyedrop that ophthalmologists use to dilate the eyes called Tropicamide does it too. If taking medications, look at side effect lists for things like "upset stomach" or diarrhea. Try stopping or changing them to see if it helps.

When LARS flares, it can abrade the anal area. The pain and irritation causes a cascade of cramping that makes the gut empty out, exacerbating the irritation, and worsening things considerably. Foods with seeds or chunky fiber that don't digest such as blackberries or nuts act like sandpaper on the anal tissue. I've had to limit these foods or do things like puree blackberries and strain out the seeds before putting them into smoothies or adding to oatmeal.

High-volume tap water enemas give me a break. I've heard reports that low-volume enemas with an empty Fleet enema bottle can wash out the fragments and stop the cramping for some people. It's not that helpful for me because once the anal tissue gets inflamed, the enema tip causes more pain even with lots of lube. I had radiation in that area and it's the reason for the sensitivity. Others with higher tumors that didn't get radiation near the anus might benefit more.

I also had pelvic floor physical therapy and MRI defecography to rule out any other physical issues. They helped a bit but again were not miracles. Worth a try, especially if you have insurance that will cover it. Abdominal exercises and walking or other aerobic exercises help the gut pass stool along more quickly and regularly. They take time but do give more predictability to when I need to go.

Rant: Oncologists have no idea that the rectum is a VITAL ORGAN. it shouldn't be ripped out and thought of as something like an appendix or tonsils. When cancer patients lose the rectum, it has many social and quality-of-life consequences. So much of our socializing revolves around dining. Rectal resection can be very isolating. I've lost lots of friends due to the dietary and time restrictions, and finding accepting new ones has been difficult. Any newly diagnosed cancer patients reading this need to discuss "organ preservation" with your oncology team. Rectal resection should be a last resort, not the default treatment for people with rectal cancer.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 10 years

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

Re: LARS. Any tips?

Postby shade » Thu Sep 28, 2023 8:29 pm

After a year and a half of LARS I started doing warm tap water enemas, at first every other day but eventually daily. The enemas really worked well for me. I was able to travel and live a mostly normal life. Two years ago I switched to a transanal irrigation device (basically an enema) called Peristeen, a product of Coloplast. My insurance helps pay for the supplies. I find it to be easier and faster than enemas, but it basically does the same thing. I would consider Peristeen as something to consider way down the road if you can't manage LARS through diet and training.

My surgeon (the one who did the low anterior resection) was totally unhelpful when I reported LARS after surgery. I consulted with several other doctors and none had much if any experience helping patients with LARS. The most useful advice I got was on this forum.
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

rp1954
Posts: 1847
Joined: Mon Jun 13, 2011 1:13 am

Re: LARS. Any tips?

Postby rp1954 » Fri Sep 29, 2023 3:44 am

chrisca wrote: SIBO (small intestine bacterial overgrowth) is a condition where gut bacteria colonize the small intestine. It revs up LARS like crazy. You can get a breath test for it you can do at home, send samples to a lab and they mail you the result. But it's usually not covered by insurance. It can be speculatively treated with herbals that aren't too expensive and if symptoms improve you can take the herbals every few months if symptoms return. SIBO can't be cured, it usually recurs after several months. But repeated treatments bring it back under control. An antibiotic treatment is also available but it can be pricey in the US. See https://journals.sagepub.com/doi/epdf/1 ... j.2014.019 for more details on the herbal treatments. I ended up using Candibactin AR and Candibactin BR every 4-6 months, and it helps quite a bit.

One of the major divides between natural/alternative medicine and std medicine is digestive health and medicine. Natural/alternative medicine in digestive health has various poor boy versions of stuff that has been forgotten or remains unread in these huge post graduate specialty medical texts (like 16-20 pounds) for gastroenterology across various editions but is not recognized by (y)our first line clinician, or even gastroenterologists who really just want to scope you for whatever - procedure oriented is where the big bucks are.

Those gut bacteria can go, and grow, a lot further than the small intestine. They can go up to the stomach (producing bowel breath) and various organs to knock out various digestive functions, with even a total digestive shutdown. Of course, something else may have already knocked one or more of these digestive functions first (chemical, cancer, and/or microbial) and start a cascade. Also since ca 2/3s of the immune system in the gut, that can be wrecked or aided too.

So, natural medicine does replacement therapies on various organ dysfunctions (e.g. enzymes, stomach acid and bile), natural/dietary bacterial inhibitors and modulators, including prebiotics and probiotics, various means of stopping chemical / microbial toxicities with dietary/natural interventions that are more fundamental than antibiotics.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: LARS. Any tips?

Postby Rock_Robster » Fri Sep 29, 2023 4:47 am

I forgot to add this for more general advice - for something produced by a government it’s pretty impressive (my surgeon said it’s the only thing he’s actually proud to give to patients):

https://coastcolorectal.com.au/wp-conte ... urgery.pdf
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev

Bianca10
Posts: 119
Joined: Thu Jun 29, 2023 4:46 pm

Re: LARS. Any tips?

Postby Bianca10 » Fri Sep 29, 2023 6:14 am

Thank you everyone, really appreciate you taking the time to share your tips and advice.
I’ve passed it onto my partner whilst also continuing to do my own research. He’s not loving the idea of the daily
enemas lol but I’ll continue to push if the LARS bad days become more than the not bad days.

Rob, thanks for that attachment! It’s also definitely one of the better ones I have seen! Thank you.


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