SO LONG STOMA and how to avoid the NG tube

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GreenMonkey
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SO LONG STOMA and how to avoid the NG tube

Postby GreenMonkey » Mon Jun 02, 2014 8:49 am

I don't want to jinx anything, but so far, this whole reversal process has been very doable. I bought lots of creams and depends and pads, expecting the worst but its been very smooth sailing once I finally got out of the hospital. True, the white, BRAT diet is boring but it beats shitting in a bag. And if I do eat something that causes burning, my BIOBIDET is a godsend! I highly recommend it.

And I read three weeks post takedown things would change for the better and it sure did! I'm even wearing white pants! I didn't expect to do that until next summer.

I do worry about getting a blockage. Can anyone tell me what foods to avoid? The last thing I want is a NG tube!

Thanks, Shannon
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
greenmonkeytales.blogspot.com

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nitebreez
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Re: SO LONG STOMA and how to avoid the NG tube

Postby nitebreez » Mon Jun 02, 2014 2:24 pm

GreenMonkey wrote:I bought lots of creams and depends and pads, expecting the worst but its been very smooth sailing once I finally got out of the hospital.

I did that exact same thing! Had a whole bunch of stuff I wound up never using. It just surprized me how well everything worked after getting out of the hospital. True,..things were petty sensitive for a little while,..but the plumbing worked! And at first I didn't do the BRAT diet,...just was pretty careful what I ate. I DID do things like bananas and home-made yogurt (yum).
T4a-Nx-M0 cc (perforated colon) Septic shock
2/19/13 emergency surgery/colostomy
4/13/13 colostomy reversed (reconnected!)
1/22/14 folfox completed
3/3/14 CT Scan NED
4/15/16 CEAs still low

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juliej
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Re: SO LONG STOMA and how to avoid the NG tube

Postby juliej » Mon Jun 02, 2014 4:28 pm

Shannon, I was like you and nitebreez - maybe the trick is to over-prepare! :D I avoided raw vegetables, nuts, popcorn, and things like that for the first 6 weeks. Then I started adding them back, a few bites at a time. The first item was a small Greek salad, then a small handful of almonds, and then by the 9-month mark, I was wolfing down popcorn!

Also, remember to protect the stoma site as it heals. No sit-ups or abdominal exercises for 6 months, although your can do almost any other kind of exercise. As soon as it's healed over, use silicon gel sheets on the scar. They've been clinically proven to shrink, flatten, and fade scars. I used ScarAway brand. You can't feel them after they're applied and mine stayed on during some pretty sweaty workouts. The material allows moisture and oxygen to pass through, so the skin underneath stays healthy.

Congratulations on a successful reversal! :D
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

gtownguy
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Re: SO LONG STOMA and how to avoid the NG tube

Postby gtownguy » Mon Jun 02, 2014 10:33 pm

Shannon,

SO glad to hear that things are going well for you. I'm 8 months post-reversal and overall things are pretty good for me as well. I've been eating whatever I want and haven't really had any problems. Once in a while, there's an occasional bad bathroom day, but that's not very often.

The only thing I've found that causes a problem is Mexican food and it wasn't a blockage - quite the opposite in fact. On the other hand, I've noticed that starchy things like rice or potatoes seems to slow things down a bit and can lead to skipping a BM sometimes for a day or two.

Anyway, hope you have continued success!
Sep 12 - dx rectal cancer - stage 3B - T3N1M0
Oct/Nov 12 - 6 wks daily radiation & Xeloda
4 Feb 13 - LAR w/ temp ileostomy
18 Mar 13 - install port
19 Mar - 02 Jul 13- FOLFOX chemo
23 Jul 13 - clean CT scans
26 Sep 13 - reverse ileo & remove port

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CRguy
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Re: SO LONG STOMA and how to avoid the NG tube

Postby CRguy » Mon Jun 02, 2014 11:24 pm

GreenMonkey wrote: Can anyone tell me what foods to avoid? The last thing I want is a NG tube!
Thanks, Shannon

I basically went with what was OK while I had the ostomy in. There should have been a list for you of what to avoid, what to limt, what was Ok and what was ..."don't even think about it ! :shock: "

My basic rule was : " If it comes out the back door, looking ANYTHING like what it was going in the front door...we don't be eating it ! "

SO ... popcorn hulls, celery strands, corn, mega vegie stuff etc. etc. etc.

Get a workable diet plan and add ONE thing to it for a few days, see how it goes... if OK add ONE more and build up to what you CAN have and then you'll avoid all the warnings about what you CAN'T have because you will have defined your own diet.

JMO YMMV
Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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GreenMonkey
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Re: SO LONG STOMA and how to avoid the NG tube

Postby GreenMonkey » Tue Jun 03, 2014 8:31 am

OH THAT IS GOOD NEWS! Thank you for replying everyone! (and its good to know about no sit ups, etc).

I notice burning sensation from any sort of spice (I think) I also worried about taking my vitamins - capsules. so I try to stretch them out.
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
greenmonkeytales.blogspot.com

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: SO LONG STOMA and how to avoid the NG tube

Postby justin case » Tue Jun 03, 2014 5:33 pm

GreenMonkey wrote:I don't want to jinx anything, but so far, this whole reversal process has been very doable. I bought lots of creams and depends and pads, expecting the worst but its been very smooth sailing once I finally got out of the hospital. True, the white, BRAT diet is boring but it beats shitting in a bag. And if I do eat something that causes burning, my BIOBIDET is a godsend! I highly recommend it.

And I read three weeks post takedown things would change for the better and it sure did! I'm even wearing white pants! I didn't expect to do that until next summer.

I do worry about getting a blockage. Can anyone tell me what foods to avoid? The last thing I want is a NG tube!

Thanks, Shannon


Lettuce unless very well chewed or shredded, and tomato skins, as well as any vegetable skins etc.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: SO LONG STOMA and how to avoid the NG tube

Postby nicola smith » Wed Jun 04, 2014 10:06 am

for me, following a diet without non-soluble fibre was very important (i.e. avoid raw vegetables, nuts, granola etc.). I did this for about 4-weeks and then gradually increased to other tupes of foods. Also the MD Anderson protocol for bowel management taught me a lot about how to use metamucil and imodium to regulate bowel movement. I had no blockages.

Here's a link to the diet.
[url]
http://www.google.ca/url?sa=t&rct=j&q=& ... 5269,d.aWw[/url]

Googling MD Anderson Bowel Management for Frequent Stools should bring up the MD Anderson program

I also found it well worth the money to buy a bidet - the sort that replaces the regular toilet seat. Bio-Bidet has worked well for me for several years now.

good luck
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D


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