CRC Veteran Check-In! LAR Syndrome question

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
Rob in PA
Posts: 1995
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

CRC Veteran Check-In! LAR Syndrome question

Postby Rob in PA » Tue Sep 24, 2019 10:40 am

Hello to all my old friends on here, and welcome new friends to the club that no one really wants to belong to...butt we are sooo thankful that it is here!

Congrats Phuong on your new position within the Club....I hear the benefits are terrific :shock: 8) :wink:

CRguy, as always, still offering up terrific advice and opinions to those in need on here (CRguy is a treasure trove of valuable insight)....and greatly appreciated from those who aren't so much on here anymore (me 8) )

It amazes me to see some of the new chemo drugs that are being mentioned, as well as procedures being performed.

As for me, I'm doing fairly well. My doctors and I are currently assessing my options for the apparently permanent rectal pain I am having from my LAR . I've been reading up on LAR Syndrome that one of my docs was telling me about and it appears that that is the issue I'm dealing with.

One option would be to go back to having a colostomy but I've already had 2 ileostomies and 1 colostomy so i've got some serious scar tissue remaining from those procedures and the doc said it could be a difficult surgery once they get in there due to the scarring.

I do have good days after my morning BM's are done and I get outside and enjoy life to the fullest, but it's those damn "flare-up" days as I call them, that keep me cooped up in the house on pain meds (low dose Percocet).

I'm wondering, does anyone else have LAR Syndrome symptoms and if so, how have you handled it? I don't want to up my percocet dose or switch to oxycontin if i can help it. I'm looking into medical marijuana but know of no one that has used it for my type of issues.

Anyhow, still kicking and loving life...just looking for a bit of that good ole Club input on this one

Cheers!
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

Gravelyguy
Posts: 229
Joined: Thu Jul 05, 2018 6:03 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Gravelyguy » Tue Sep 24, 2019 10:43 am

Hi Rob,

what kind of pain are you experiencing? Any other symptoms?

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

User avatar
Rob in PA
Posts: 1995
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rob in PA » Tue Sep 24, 2019 11:59 am

Hi Dave,
Dull achey internal pain in pelvis area pretty much all the time but tolerable, then I get sharp jagged pains that come out of nowhere that make me literally twitch in pain when it happens. My wife knows exactly when i am getting these flare ups because she can tell I'm fidgety.

This pain is not to be confused with the Butt burn that i'm sure many of us experience from having many BM's and wiping ones self raw with TP and baby wipes. Butt Burn is more of a surface pain. What i'm having trouble with is internally just inside the rectum.

I've had exams, scans, etc... and other than scar tissue, nothing is technically going on down there.

Frustrating to say the least, butt its collateral damage and I'm trying to deal with it.
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

Gravelyguy
Posts: 229
Joined: Thu Jul 05, 2018 6:03 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Gravelyguy » Tue Sep 24, 2019 12:05 pm

Rob in PA wrote:Hi Dave,
Dull achey internal pain in pelvis area pretty much all the time but tolerable, then I get sharp jagged pains that come out of nowhere that make me literally twitch in pain when it happens. My wife knows exactly when i am getting these flare ups because she can tell I'm fidgety.

This pain is not to be confused with the Butt burn that i'm sure many of us experience from having many BM's and wiping ones self raw with TP and baby wipes. Butt Burn is more of a surface pain. What i'm having trouble with is internally just inside the rectum.

I've had exams, scans, etc... and other than scar tissue, nothing is technically going on down there.

Frustrating to say the least, butt its collateral damage and I'm trying to deal with it.


Rob,

Man that sounds rough. I am sorry you have to deal with all of that. I have no advice to give as I have not had those issues. This LAR Syndrome stuff is maddening with all the different forms it can take.

I am going back to Mayo in December and will hopefully be meeting with a researcher there who is working on this. If I can, I will relay your symptoms.

Dave

I
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

User avatar
CRguy
Posts: 9996
Joined: Sun Feb 10, 2008 6:00 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby CRguy » Tue Sep 24, 2019 12:21 pm

Hey Rob good to hear from you buddy
BUTT not why :(
a pain in the BUTT IS a real pain in the ass :!:

Thanks for the kind words and wish I had some golden nuggets to throw your way ....
SO just spitballing here :

neuropathic pain modifiers ? gabapentin / pregabalin
adjunct pain meds ? Tramadol
antispasmodics or SSRI type drugs having intestinal actions ? Citalopram
related to constipation or diarrhea episodes ?
nerve entrapment/ irritation from scar tissue ?
surgical staples migrated ?
discussion of local nerve ablation if identified and localized ?
consult with a pain specialist ?

just some things going thru my head about possible discussions for your docs

Here's to getting to the bottom of the problem :shock:

Cheers and best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
Rob in PA
Posts: 1995
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rob in PA » Tue Sep 24, 2019 12:53 pm

Thanks Dave and CRGuy,
Yes, CR, I am on Gabapentin now...seems to have helped a little with the neuropathy in my feet butt not so much with the nerve pain in my arse. Staples have crossed my mind, butt the docs don't think thats the issue.
Citolopram sounds interesting, I'll ask about that. Don't really want to ramp up the pain meds if i don't have to, butt honestly, that's the ONLY thing that gives me relief albeit at the expense of being drowsy/lazy when on them.
Nerve ablation is a real possibility because as of now, when i have flare ups, there is a nerve in front of my hip, diagonal down from navel that when i push on it with two fingers it relieves the pain a bit. I should get that bugger fried.

As always, great input! Thanks both
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

Re: CRC Veteran Check-In! LAR Syndrome question

Postby NHMike » Tue Sep 24, 2019 1:25 pm

I had the pain for a few months - I believe that it was severed nerve that quieted down over time. I don't have any pain today.
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

User avatar
Rob in PA
Posts: 1995
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rob in PA » Tue Sep 24, 2019 2:24 pm

I am glad it settled down for you Mike. I only wish that was my case, its been 11 years since my LAR and still painful. In all honesty, when things were looking kind of grim I had to pick and choose my battles, and put that issue aside, now I'm fortunate to still be here and its something I have to address.
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

wife2jeff
Posts: 39
Joined: Thu Sep 12, 2019 11:21 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby wife2jeff » Tue Sep 24, 2019 6:01 pm

Sorry you are dealing with this, I'm pretty sure this is the pain my husband is feeling. His reconnect is only a few inches from anal verge and he gets very bad tenesmus pain when he opens his bowels it's usually during his clustering times, he also gets the pain even just passing gas. We are only a couple months out from his surgery and are still trying to figure out how to get his bowels on track and it has been very frustrating, but this tenesmus and pain down there is real and bad. Hope you get it figured out too.

wife2jeff
Posts: 39
Joined: Thu Sep 12, 2019 11:21 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby wife2jeff » Tue Sep 24, 2019 6:03 pm

also to CRguy how does Citalopram work for the spasm and cramping of tenesmus?

User avatar
CRguy
Posts: 9996
Joined: Sun Feb 10, 2008 6:00 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby CRguy » Tue Sep 24, 2019 7:09 pm

Just quick review references here for you :
Effects on gastrointestinal functions and symptoms of serotonergic psychoactive agents used in functional gastrointestinal diseases

Antidepressants for the treatment of Functional Gastrointestinal Disorders

These have looked at antidepressant meds and their effects on GIT function, diarrhea, constipation, spasm, pain etc.
( kind of IBS / IBD / Crohns / colitis type spectrum )
and certain ones give relief of certain symptoms and improve patient QOL.
My B-I-L ( resection / LARS ) used the Citalopram which is why I mentioned it specifically.
I have not had any first hand experience with them myself.

Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
Rob in PA
Posts: 1995
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rob in PA » Tue Sep 24, 2019 8:15 pm

W2Jeff, that sounds exactly what is going on with me. Anastomosis site just near the anal verge, flares up during clustering. I think I'm in the minority of those with pain for so long so I wouldn't get too worried about Jeff and any lingering pain just yet. I've always been the oddball! 8)

Once again, CR comes through with some really good intel! Thanks CR
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

wife2jeff
Posts: 39
Joined: Thu Sep 12, 2019 11:21 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby wife2jeff » Tue Sep 24, 2019 9:46 pm

Thank you for the information on those drugs, I will look into them.
That is a long time out and still have that, I am so sorry, just seeing my husband going through it right now and he's only a couple months out I can't imagine 11 years. I sure hope you can find something that works.

Can I ask you since your resection is similar to my husband, have you found anything that helps with bowels, my husband does not deal with diarrhea, more lack of so we are trying to figure out how to get him "regular" so he doesn't deal with the clustering.

User avatar
Rob in PA
Posts: 1995
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: CRC Veteran Check-In! LAR Syndrome question

Postby Rob in PA » Wed Sep 25, 2019 12:53 pm

Protein foods help me avoid diarrhea, but I have to be careful not to get too far on the "other" side that I get constipated. I totallty stopped eating lettuce, broccoli, cauliflower as it tears me up. All foods I once loved, butt had to move on from them.

I usually eat a bagel or toast in the mornings with a cup of coffee and that seems to be the thing that keeps me most regular in terms of bowel form.

Clustering kills me, those are my worst days, and after 11 years I still haven't figured out a way to avoid it totally. Those are the days I usually take a Percocet to calm the sharp pains down.

Also, Aveno baths help tremendously even though you'd think a bath is external help, it helps internally too...and, I think it helps psychologically too. I've never been a bath guy, so even though it helps me, my wife still has to remind my stubborn self to "get in the damn bath tub" when i have flare ups! :roll:

I've tried the enema routine, but that didn't work for me. I've read on here that its been a game changer for some, but"t" not for me.

11 years of almost daily pain still doesn't bring me down from the "high" i still get from seeing my 2 children go from age 9 and 6 when I was diagnosed to now being in college and becoming young adults!!!!! 8) 8) 8) 8) 8) 8) 8) YAY me! :lol: :lol: :lol: :lol:

Hope this helps...and, thanks in return for helping me
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

wife2jeff
Posts: 39
Joined: Thu Sep 12, 2019 11:21 pm

Re: CRC Veteran Check-In! LAR Syndrome question

Postby wife2jeff » Wed Sep 25, 2019 1:07 pm

Sounds like you have a really great attitude towards all of what you have been through. My husband has been very low and I'm sure its because of all the struggles right now, I hear more often than not that he wants to give up, that is hard to hear, it worries me he will. Hoping he will start to get somewhere with the bowels as the clustering like you is really hard, 2 days ago he went probably over 30x and the tenesmus pain was horrible. Now chemo is kicking his butt, he just got pump off today for 2nd round and it definitely kicked sooner than the first. Thanks for sharing.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: mpbser and 34 guests