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by chrisca
Wed Sep 20, 2023 5:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: LARS. Any tips?
Replies: 15
Views: 2422

Re: LARS. Any tips?

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...
by chrisca
Tue Aug 16, 2022 4:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: (Adhesions?) causing partial obstruction
Replies: 5
Views: 2004

Re: (Adhesions?) causing partial obstruction

I had adhesions at the ileostomy reversal site. They gradually worsened over about a year until a blockage formed and it needed surgery to resolve. Since then, I've had no more problems for about ten years. If surgery is done, the surgeon should use Seprafilm between the small bowel and abdominal li...
by chrisca
Tue Nov 16, 2021 3:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: LAR Syndrome: Best $7 I ever spent...
Replies: 2
Views: 2333

Re: LAR Syndrome: Best $7 I ever spent...

We did not do a stool test as the cost was far more than the drug, plus the stool tests have a high false negative rate. Pentasa has been helpful for short term relief if I have a flare-up, but I can’t use it long-term due to gallbladder pain. There’s been no negative effects from the tinidazole. We...
by chrisca
Thu Nov 11, 2021 10:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: LAR Syndrome: Best $7 I ever spent...
Replies: 2
Views: 2333

LAR Syndrome: Best $7 I ever spent...

It's been over ten years dealing with LAR Syndrome, I've been to multiple specialists, with very little improvement to show for it. Finally, something that's helped a bit. A couple of months back, I had a bad episode of explosive diarrhea lasting over a week. The symptoms were different from what I'...
by chrisca
Wed Apr 15, 2020 11:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Colonoscopy prep: Golytely vs. Moviprep
Replies: 1
Views: 928

Colonoscopy prep: Golytely vs. Moviprep

I just had my 10-yr. follow-up scope post-treatment. Good news, it was clean. But I'll say I didn't have the best experience with Moviprep, the newer bowel prep prescription. In the past, I used Golytely which other than irritation to the anal area had no other issues. With Moviprep, I was instructe...
by chrisca
Tue Nov 26, 2019 9:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newly diagnosed rectal cancer
Replies: 218
Views: 30483

Re: Newly diagnosed rectal cancer

You have a low tumor. I've been there, and if I were doing this again this is my advice: Get genetic testing as it will affect best choice of treatment. Men should measure baseline testosterone before treatment because radiation will lower it and doctors might not want to supplement it if it drops t...
by chrisca
Tue Nov 26, 2019 9:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Collagen supplementation for LAR Syndrome
Replies: 0
Views: 6394

Collagen supplementation for LAR Syndrome

I've been supplementing with marine collagen peptides from Vital Proteins for close to a year now. I take about 12 grams a day, split between breakfast and dinner. I've noticed that while it's no miracle, it has reduced anorectal bleeding and irritation. This is possibly by toughening up the radiati...
by chrisca
Sun Jul 07, 2019 4:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: LAR syndrome sufferers -- beware of sucralose/Splenda
Replies: 3
Views: 2385

LAR syndrome sufferers -- beware of sucralose/Splenda

I've posted here before that sugar alcohols (sorbitol, mannitol, erythritol, maltitol, and xylitol) can aggravate LAR syndrome by causing gut cramping. They increase stool fragmentation & result in longer, more painful BMs with more stress on the anorectal tissue, aggravating hemorrhoids & c...
by chrisca
Wed Jan 09, 2019 5:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ehlers-Danlos Syndrome & CRC
Replies: 3
Views: 2467

Ehlers-Danlos Syndrome & CRC

I've been looking into some symptoms I've been experiencing for many years, and they are pointing to a genetic condition called Ehlers-Danlos syndrome. Long story short, there's a very interesting presentation here: https://www.ehlers-danlos.com/2014-physicians-conference/Collins.pdf There are lots ...
by chrisca
Mon Nov 26, 2018 9:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Robotic surgery and LAR syndrome
Replies: 10
Views: 1951

Robotic surgery and LAR syndrome

At a recent GI appointment my specialist mentioned that the growing popularity of robotic procedures for rectal resection will likely increase the incidence of LAR syndrome. He said, "It's likely in the future you're going to have a lot of company." The reasons are that the robotic procedu...
by chrisca
Wed Nov 21, 2018 11:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Migraines and LAR syndrome
Replies: 1
Views: 850

Migraines and LAR syndrome

I get mild migraines fairly infrequently, about two or three times a month. I've noticed that after I see the aura, a few hours later there will be a nasty BM that acts like dumping syndrome where everything tries to empty out, causing a long time on the toilet and some pain. When I checked online a...
by chrisca
Wed Nov 21, 2018 11:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ileostomy reversal issues after colorectal cancer stage 4
Replies: 6
Views: 1375

Re: Ileostomy reversal issues after colorectal cancer stage 4

There are a few things that might help. Look into some of the IBS medications, which can reduce bowel contractions and improve continence. Pentasa is one of these and it helped me, especially at low doses (about 125 mg per day). Physical therapy might also help to strengthen pelvic floor muscles. Th...
by chrisca
Wed Nov 21, 2018 11:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pentasa for LAR Syndrome
Replies: 5
Views: 2091

Re: Pentasa for LAR Syndrome

... If anyone has tried it or plans to, please post back here with your findings ... I saw my GP today and asked about a Pentasa prescription. He recommended against it, citing the co-morbitities that I currently have. He claimed that, in my case, it may do me more harm than good. Well, darn... The...
by chrisca
Sun Feb 18, 2018 2:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pentasa for LAR Syndrome
Replies: 5
Views: 2091

Re: Pentasa for LAR Syndrome

Since my last post, I've been taking the 125 mg dose once a day after dinner. No nausea, and I'd say there is about a 20 to 30% improvement in stool caliber and length, meaning there is less effort required to "finish up" the BM. For anyone trying to start the drug, I'd say to give it a we...
by chrisca
Thu Feb 15, 2018 12:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: OTC Suggestions for Nausea from Oxaliplatin
Replies: 25
Views: 5757

Re: OTC Suggestions for Nausea from Oxaliplatin

CBD oil can be helpful. You can also look at Marinol (prescription THC from cannabis) which comes in pill form. Unlike CBD, it can produce a high at larger doses. Tincture of cannabis is also helpful if it's legal in your state or available through friends. For Marinol and tincture, you'll fail a dr...

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