Reversal Surgery 3 weeks out- Struggling- please help

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Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby Badass » Mon Feb 10, 2014 11:01 am

We are all different, so find out what works for you.
Metamucil (part of the Anderson program) is terrible for me-- causes non-stop clustering.
Imodium generally works better for me at slowing things down than Lomotil and doesn't make me as sleepy.
Prune juice causes me diarrhea... even just a little.
I got a Biobidet-type toilet seat and haven't had any butt burn issues since. It is wonderful! I forget which brand and model-- can check it if you are interested.
I try to have a lot of SOLUBLE fiber- namely oatmeal and apples. Seems to help. I use the real, cook from scratch oatmeal, not instant. I just put it in the rice cooker before I go to bed, put on the timer and wake up to fresh, hot oatmeal! I add frozen blueberries and nuts.

You are really early in the process and what you are going through is normal, but experiment with cutting out the prune juice and see what happens. Also the benefiber or metamucil works wonders for some but for me it just kept me going and going and going and...
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

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Location: Portland, OR

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby teachpdx » Tue Feb 11, 2014 1:49 am

This is about the bidet a few people mentioned. I ordered a "biffy" online. It attaches to your current water supply and to the right side of your toilet. I've found it to be a total life saver. With multiple "sittings" you don't end up crying. You get to pat dry versus wiping. Best of luck. kgd
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

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Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby GreenMonkey » Tue Feb 11, 2014 11:24 am

yes, my reversal is scheduled for early May and I've been copying and pasting everyones advice in a word doc for future reverence.
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED

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Location: Utah

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby StupidAssCancer » Tue Feb 11, 2014 11:33 am

Yes, every bit of info shared here has been great!
For me the major turning point was getting on the lomotil. Not neccisarily to control diarrhea at all but to control and take away the spasm, urgency, and rectal cramping I was having. This took it right away and instantly I felt like I could do this!
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

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Location: NY

Re: Reversal Surgery 3 weeks out- Struggling- please help

Postby lorrainem » Wed Feb 12, 2014 7:08 pm

My ADD is high today, so pardon if I repeat something someone else said.
First off…what's happening is not unusual. It takes a body to level out on it's own time. Some go like this for short-term and some longer. Most importantly I want to help you with your comfort as long as your doc is good with your symptoms.

No toilet paper. I used (and still do) Prep H wipes. There are others who use baby wipes or wet toilet paper, the prep h wipes were the thing that worked for me…expensive, but comfort came at a price.
After wipe, apply Nupercanial…it's a petroleum based ointment that is very protecting.
Lastly apply Calmoseptine, can be purchased on Amazon (if you can wait) or if you are US, Walgreens…some keep in stock on shelves…some behind the counter in pharmacy so don't be alarmed if you need to ask for it.

I am five years post takedown and still need the wipes each time I have a bm and the calmoseptine as needed (for me often.) Everyone is different and my body just didn't really like the takedown so much. But that's another story.

What your going through really sucks, but hang it; it improves.

Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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