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by Zod
Sat Feb 22, 2020 4:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Questions for those with a Colostomy
Replies: 3
Views: 668

Re: Questions for those with a Colostomy

Some people eat marshmallows to modify ileostomy output. Maybe that could also affect colostomy output? Consider timing of major meals? Do you eat most of your food intake in the evenings? If so, try changing largest meal to breakfast or lunch? I had to change my sleep position - but only a little -...
by Zod
Sat Feb 22, 2020 4:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tenesmus + Flat stools for 15 years... I'm Desperate!
Replies: 15
Views: 1354

Re: Tenesmus + Flat stools for 15 years... I'm Desperate!

Did you try enemas? Some people with LARS do daily enemas (takes 1/2 to 1 hour) and are done for the day with pooping.
by Zod
Sat Jan 04, 2020 1:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Advice - new ileostomy reversal
Replies: 11
Views: 1268

Re: Advice - new ileostomy reversal

...I’m lining up for an ileo reversal soon too... One of the other things you could do in preparation for your up-coming January 20th ileo reversal is to read some of the old posts by MissMolly on the anatomy related to ULAR surgeries in an effort to try to understand what functions are present in ...
by Zod
Sat Jan 04, 2020 1:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Advice - new ileostomy reversal
Replies: 11
Views: 1268

Re: Advice - new ileostomy reversal

Sorry for the rough start. It does get better. I found using depends and having a sense of humor helped for the first couple of weeks. If your bum gets sore, I found a shallow bath with Dreft soap really helped. How long did you have an ileostomy? A lot of the issue is getting your colon to wake up...
by Zod
Sun Dec 22, 2019 9:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Advice - new ileostomy reversal
Replies: 11
Views: 1268

Re: Advice - new ileostomy reversal

Forgot to mention 2 things:

Defecation bouts - 27+ yesterday (lost count), 14 so far today as of 6 pm.

I'm adjusting dose on metamucil to soften stool, may have overcorrected. Constipated yesterday but last 3 bouts today watery or gelatinous.
by Zod
Sun Dec 22, 2019 9:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Advice - new ileostomy reversal
Replies: 11
Views: 1268

Advice - new ileostomy reversal

Y'all, I had my ileostomy from Feb 2019 reversed last week (Dec 11). Surgery was simultaneous with curative-intent liver resection plus hernia repair, so 3 surgeons in one go. Wonder what advice I can get regarding relentless fecal incontinence that started 2 days ago. I will usually get no warning ...
by Zod
Wed Dec 04, 2019 6:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Baseline CEA levels
Replies: 20
Views: 4032

Re: Baseline CEA levels

For what it's worth, in US for me at least units are ng/ml (two cancer centers, both in California).

By happenstance, I had CEA done twice in 2 days at different labs. One was 1.6 and the other was 3.4. Values evidently, at least for low values, can vary by a factor of 2 is appears.
by Zod
Wed Dec 04, 2019 6:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hiccup
Replies: 3
Views: 838

Re: Hiccup

I tend to get hiccups for 1-2 days after chemo (folfoxiri). Hiccups tend to be persistent during the one day and to restart if I manage to get them stopped. Seems harmless enough although a bother.
by Zod
Fri Nov 15, 2019 3:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Quick intro -- diagnosed Friday
Replies: 147
Views: 23576

Re: Quick intro -- diagnosed Friday

You absolutely need to tell them of all of your symptoms, especially neuropathy. They ended up reducing my Oxi dosage when I started getting it. I tell my oncologist about *everything* that lasts more than a few hours and also about anything briefer that seems significant. I preface this with him b...
by Zod
Fri Nov 15, 2019 3:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pain below right ribcage
Replies: 8
Views: 1048

Re: Pain below right ribcage

I get the same thing, both sides, just under the short ribs. Been happening since before my latest round of chemo started. I also get some central pain (front) that sometimes is triggered immediately by drinking water or eating. Current thinking from the docs is that it's related to GERD from stress...
by Zod
Tue Oct 08, 2019 10:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda Side Effects: bad joint pain
Replies: 25
Views: 4233

Re: Keytruda Side Effects: bad joint pain

Two things: 1 The docs are presumably weighing risks (that is still a liver surgery, still invasive with some level of risk) versus the likely benefit. 2 Check with your oncodoc and/or other docs and strongly tell them about your knee symptoms if you haven't already. Good medical oncologists should ...
by Zod
Tue Oct 08, 2019 9:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Upcoming Surgery
Replies: 23
Views: 3187

Re: Upcoming Surgery

I also had an LAR 9 months ago and had (and somewhat still have) problems urinating. Not particularly bad but I seem to be able to void the "top half" of my bladder. E.g., if I'm full then I can void some easily but have to push/tense a lot to get much of the rest out. I'm also on Flomax p...
by Zod
Tue Oct 08, 2019 9:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Long flights with cancer/chemo
Replies: 15
Views: 2199

Re: Long flights with cancer/chemo

My medical oncologist is worried about clots if I fly but I have a mild clotting disorder as well.

He prescribed a blood thinner that I take before the flight.
by Zod
Tue Oct 08, 2019 9:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How long does MSK take to get approval to install HAI pump?
Replies: 10
Views: 1644

Re: How long does MSK take to get approval to install HAI pump?

There's no FDA approval required for getting an HAI pump anywhere. I'm told that the combination of Medtronic pump and Codman catheter is off-label and therefore needs FDA approval. Want to confirm or deny that. I expect that MSK has a "bulk approval" of some sort maybe? Or perhaps as you...

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