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by Rikimaroo
Sat Oct 05, 2019 4:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CRC Veteran Check-In! LAR Syndrome question
Replies: 33
Views: 2372

Re: CRC Veteran Check-In! LAR Syndrome question

Lee do you use a stealth belt for your colostomy, or just leave it under your clothes? Also does the bag not come with it's own built in wafer? With the Ileo bag I never had to buy any wafer, just the barrier ring.
by Rikimaroo
Fri Oct 04, 2019 11:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery Monday 7th 2019 Salvage Resection Surgery
Replies: 3
Views: 267

Surgery Monday 7th 2019 Salvage Resection Surgery

Well my insurance finally approved the procedure for Cleveland Clinic Ohio. The surgery is a resection of the left seminal vesicle where the lesion has recurred. SUV uptake at 9.1 with this week pet scan, so definitely malignancy. I also asked for Colostomy bag back, looking forward to take control ...
by Rikimaroo
Wed Oct 02, 2019 9:39 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CRC Veteran Check-In! LAR Syndrome question
Replies: 33
Views: 2372

Re: CRC Veteran Check-In! LAR Syndrome question

Cool Lee. Thanks so much for the information. How often did you change the bag itself?
by Rikimaroo
Wed Oct 02, 2019 9:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newly diagnosed rectal cancer
Replies: 163
Views: 13863

Re: Newly diagnosed rectal cancer

My doctor is calling in a prescription but I forgot the name. Procto-something. He said it will help with inflammation and to use that I think three times a day and the other creams when I wasn't using that one. I asked if over the counter pain pills like acetaminophen would help and he said it can...
by Rikimaroo
Mon Sep 30, 2019 9:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Help with bowels
Replies: 54
Views: 3806

Re: Help with bowels

No I don't think he would do well with that. He didn't need one after his low anterior resection. He is so ready to give up and is so frustrated it's hard to watch him and hear him. It breaks my heart to see him struggling. I think if he had to have a colostomy he would give up. I wish I knew other...
by Rikimaroo
Sun Sep 29, 2019 7:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CRC Veteran Check-In! LAR Syndrome question
Replies: 33
Views: 2372

Re: CRC Veteran Check-In! LAR Syndrome question

For my ileo I mainly used 8805 - Hollister Adapt CeraRing™ Barrier Ring, Standard, 4.5mm Thick, 2" OD and I use 507760 - Hollister Universal Remover Wipe For Adhesive and Barrier and they worked great. I have the powder that you sprinkle after cleaning the adhesive. You sprinkle it first then y...
by Rikimaroo
Sun Sep 29, 2019 12:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CRC Veteran Check-In! LAR Syndrome question
Replies: 33
Views: 2372

Re: CRC Veteran Check-In! LAR Syndrome question

Hi Lee, Yes I have been on it a few times. I had an ileostomy before so I am aware of how this works. The ostomy nurse told me that it will be less active then the ileostomy. She also mentioned something called a 2 piece system, which I actually heard of, but with the ileo, I would just open the bot...
by Rikimaroo
Sun Sep 29, 2019 11:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Help with bowels
Replies: 54
Views: 3806

Re: Help with bowels

It's sounds just like what I go through. It's sounds normal. The discomfort and pain is normal. It doesn't happen all the time and then there are days your perfectly fine. I was on the toilet last night from 12-3 am, it was frustrating, but mainly me pushing to get the poop out. No diarrhea typicall...
by Rikimaroo
Sat Sep 28, 2019 2:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CRC Veteran Check-In! LAR Syndrome question
Replies: 33
Views: 2372

Re: CRC Veteran Check-In! LAR Syndrome question

Mike, Your comment alone makes me even want the bag more. For you to even have 27 bowel movements at this timeframe of your journey really makes me wonder if it will get better. The most bowel movements I have now is probably 12 max one bad days. 27 just doesn't seem right, perhaps food? I know you ...
by Rikimaroo
Thu Sep 26, 2019 6:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Help with bowels
Replies: 54
Views: 3806

Re: Help with bowels

Sounds like he is having major clustering. It means you go drop a few and not much at all, maybe small piece leave and then go again multiple times. And then it sounds like he is constipated, but not the constipation we are use to when we have everything intact. I have my entire colon, but they took...
by Rikimaroo
Thu Sep 26, 2019 6:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CRC Veteran Check-In! LAR Syndrome question
Replies: 33
Views: 2372

Re: CRC Veteran Check-In! LAR Syndrome question

I have the same pain, dull intermittent pain and all around frustration and aggravating type pain. It's not painful, its more of a sensation of uncomfortable feeling of a dull pain. It's tolerable but miserable. I am going back for surgery on the 7th to remove a pelvic recurrence and I told the doct...
by Rikimaroo
Fri Sep 06, 2019 11:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA jump from 2.8 to 33 in 6 weeks -- what to make?
Replies: 21
Views: 2080

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make?

I don't want to scare you but my CEA gradually went up from .8 to 22. Over a course of six months and the pet scan showed clear, then after six months the pet scan showed something in the pelvic region. My CEA has been a good indicator for me. They put me back on Chemo FOLFIRI and now my CEA is 1.5,...
by Rikimaroo
Fri Aug 30, 2019 11:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Diagnosed while working abroad
Replies: 33
Views: 2201

Re: Diagnosed while working abroad

This place from what I heard is one of the top institutions around the world and big on cancer treatment. https://www.heidelberg-university-hospital.com/home/ I am not sure how far you live from there, but I would assume there are other places. Give them a call and as about colorectal surgery, neoad...
by Rikimaroo
Wed Aug 28, 2019 5:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Did anyone ever decide to go back to ileostomy after reversal
Replies: 34
Views: 5030

Re: Did anyone ever decide to go back to ileostomy after reversal

Your right Stu and I agree wholeheartedly. I sent a message to my oncologist and he said it like this bluntly, rikimaroo stop going off on tangents and messing around this is your life we are talking about and you already made a mistake before don't make it again. He is right, these guys know what t...
by Rikimaroo
Wed Aug 28, 2019 9:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Did anyone ever decide to go back to ileostomy after reversal
Replies: 34
Views: 5030

Re: Did anyone ever decide to go back to ileostomy after reversal

Update - So currently the pelvic recurrence based on MRI states lesion with Fibrotic Signal. Typically that means dying tissue, or nothing. However Cleveland Clinic here in Weston is referring me to the CC in Ohio and I spoke to there Dr. Scott Steele. He suggested I do surgery with Intraoperative R...

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