Low Anterior Resection Syndrome: Do you have it?

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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 » Tue Aug 14, 2018 8:43 am


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

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

Postby lakeswim » Thu Aug 23, 2018 7:05 pm

PhillyPatient. Thanks for your note and good wishes. I feel as though I need to start asking questions because based on what I've read here and heard from oncologists in Cleveland (not my team where I live), the "watch and wait" is a risky approach and I had planned to do surgery regardless (there wasn't a question in my mind, as I have children) and have my rectum removed.

But, after reading through some of this, I think my surgeon(s) - in two places (haven't decided which yet - which is an entire other post) - were both wrong when they said I'd just have "increased frequency and urgency" after my surgery. It sounds like quite a different story!

And I agree that there should be way more information provided to the patient - and OPPORTUNITY for thinking time and feedback!

Thank you.
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*

Joecool1983
Posts: 44
Joined: Sat Jun 11, 2016 12:45 pm
Facebook Username: Joseph Piazzola

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

Postby Joecool1983 » Fri Aug 24, 2018 10:52 am

I got a Colostomy back in January of this year. January 11 actually. I got it due to the severe bowel issues I was having because of LARS. Constipation, diarrhea when I took laxatives/stool softeners and when I had chemo. Most severely stool fragmentation and clustering. Going to the bathroom 10, 20, 30, up to 35 times in one day. Also, I had complications from surgery. A year and a half after my Colon Resection, 2 holes were discovered in my anastomosis that were leaking stool into an extremely infected presacral abscess. I found a Gastroenterologist named Dr. Raina who attempted to patch up the holes. One hole he was able to suture shut. The other one was in a weird spot/angle that kept him from doing anything with it. In January I elected to just get the colostomy and shut off the whole area. It's made life so much better. Quality of life is so much better than it was before.
Diagnosed 12/17/15- 32 years old- Tumor 3"x1.5" at the Rectosigmoid Colon
Stage IIIA T3N1M0
Radiation and chemotherapy(Xeloda pill form) January 2016- February 2016
4/11/16- Surgery to remove the tumor/colon resection. Robotic LAR/Dissection of Lymph Node. 1/19 showed any involvement
5/16-10/16- Follow up chemotherapy- FOLFOX, 8 Treatments
1/17- Routine CT scan found 3 Metastases on my Liver
4/17-8/17- 5 Treatments Avastin/Irinotecan

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

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

Postby Phillypatient » Fri Aug 24, 2018 6:28 pm

PhillyPatient. Thanks for your note and good wishes

.
Sure, ask questions nonstop. It's your body. You are going to have to live with the consequences of any decision you make. The proverbial buck stops with you. So no question is too dumb and no concern is too small. LARS is serious and it annoys the hell out of me that surgeons minimize the issue pre-surgery. Consider joecool1983 whose quality of life was so bad he opted for a permanent colostomy...and he's most definitely not the first. This is probably why the most renowned surgeons, Dr Habr-Gama from Brazil and the head of MSK, Dr. Aguilar, are trying to eliminate the need for surgery in certain cases. They understand the impact of such a severe surgery on the body and on a person's quality of life. When the very surgeons who do the procedure are trying to devise a way to eliminate the need for this surgery, that should tell you something...

Having said that, there is no question watch and wait is riskier. It's a question of balancing quality of life and risk of recurrence/metastases quite honestly. There are some wonderful threads in this forum regarding "watch and wait" and I encourage you to read them.
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

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

Postby AppleTree » Fri Aug 24, 2018 9:38 pm

I only had my bag for a short period of time, due to infection under it. Then I went through chemo. When I first got home I did suffer from terrible, painful LARS. Plus, it just popped out, no control at all. Metamucil gave me daily runs. I now have a monthly Sandostatin shot and take up to 8 Lomotol a day for diareah. I eat very bland foods, cooked veggies, cooked fruit, bananas, rice, yogurt, low fiber potato bread, rice, scrambled hamburger, etc. Spicy foods hurt way to much to make it worth it. So, my issue is diareah. If I can keep the stool firm enough, then it is less acidic on my skin and easier to clean up...having feces dripping down your legs is no fun, but I can deal with a semi-solid stool. I wear Depends anytime I go out because I never know when it will happen. The shot wears off in 3 weeks and then I am totally miserable and stick mostly with the BRAT diet. The issue for me is the incredible pain just before it comes out...often times no where near a toilet. Right now my insurance pays for the Sandostatin shot. But if I lost the ability to have the shot, I think I would get a permanent bag immediately.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!


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