Reversal Log: Experience,Problems, Q & A's

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kelltx
Posts: 72
Joined: Thu Nov 08, 2012 11:45 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby kelltx » Wed Dec 05, 2012 5:34 pm

lol @ your 8yo's description :)

wishing you a great xmas shopping.

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby Badass » Wed Dec 05, 2012 5:52 pm

Sammy, I am in hysterics here imagining your son at show and tell! With Kelltx home now, it sounds like all three of us are making great strides.
At 8 days out, I seem to have well-formed output and one or two clusters during the day. Sleeping through the night has not been a problem. Still on low residue diet.

My biggest complaints are:
1. Walking around with full intestines all day, waiting for the cluster. I feel very constipated and uncomfortable.
2. When the cluster comes, it is manageable but goes on for an hour and a half to two hours.

I am going to try the Anderson psyllium and prune juice approach next week and hope that consolidates my bathroom activity a bit.

My daily breakfast is now oatmeal with banana and applesauce followed by a hot drink. Seems to help a lot.

Cheers to Us!

Jane
Last edited by Badass on Wed Dec 05, 2012 6:48 pm, edited 1 time in total.
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)

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

Re: Reversal Log: Experience,Problems, Q & A's

Postby justin case » Wed Dec 05, 2012 6:24 pm

Show and tell, huh. Thats why I haven't told my 36 year old a thing. Kelltex, You have now joined myself, and the infamous Brown Bagger, concerning the 3 to 4 week reversal, welcome to the club! Rusuja, things are better than you were expecting, aren't they? To all of you, I just thought I would share an 8 month revalation. I've been carrying a spare pair of underwear for the last eight months, and they have never been needed :shock: I think I'll lighten my load starting now!!! As far as the always full part, or feeling like you don't quite empty, that takes a while to overcome. I don't have that problem anymore, and I rarely cluster. Good luck to all of you :wink:
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

SammyJ
Posts: 198
Joined: Wed Jul 25, 2012 5:03 pm
Facebook Username: Samantha.douglas

Re: Reversal Log: Experience,Problems, Q & A's

Postby SammyJ » Thu Dec 06, 2012 7:12 pm

Still all good here. After surviving christmas shopping i went out last night (my worst time of day) to my son's soiree music concert. So feeling so much more confident. I have called work this morning to talk about return to work but will try and stay home for the whole of Jan while the kids are on holidays (we are in Australia).

Question for you recent reversals though - are you still really bloated? I look about 5 months pregnant, its just not going down at all. I know....its only been 2 weeks......
Diagnosed Stage 3A Rectal Cancer March 12, age 39
ULAR and temp ileostomy March 12
Folfox started April 12 , completed Oct 12.
NED 16/10/12
Ileostomy reversal 23 Nov 12....

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby Badass » Thu Dec 06, 2012 7:25 pm

Michael, congratz on losing the back-up underwear!!! An under-appreciated milestone for sure!

Sammy, yes, bloat-city here. I have been drinking tea and that seems to help (diuretic) and taking chewable anti-gas tablets which also help a lot. But I still can't get comfortable in my regular pants-- still in elastic waist. Some of it must just be tissue swelling from surgery. Still can't get my ring on its usual finger.

Day 9 here, post-surgery. Things continue to be improving. Started 1 teaspoon psyllium husk after dinner as recommended by Anderson. I will see how that goes! Great that you made it to your son's concert!

Jane
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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RayGirl
Posts: 1282
Joined: Wed Jun 16, 2010 4:21 pm
Location: Texas

Re: Reversal Log: Experience,Problems, Q & A's

Postby RayGirl » Fri Dec 07, 2012 6:53 am

I found In those early days when I really had to be somewhere my colon magically complied. I usually had a compete clean out just prior to leaving, I'm guessing nerves, then While I was at school play/scout meeting/dance practice no activity.

Same thing when I traveled the night before would have the absolute worse night, complete bowel clean out and then smooth sailing the entire day of the plane/car trip. I am pretty systematic in my bm schedule; Immediately after breakfast, 1 hour after lunch and then at bedtime. the morning and afternoon sessions are right before about an hour bus ride. So maybe my colon is just anti-traveling full and make sure iself is comfortable?
Stage III Rectal: T3, 3/21 Nodes
dxn:Feb-10
Radiation&Xeloda
7.5 hr surgery
12th FOLFOX Nov-10
Takedown:Jan-11

"Life is not about waiting for the storm to pass, it's about learning how to dance in the rain."

kelltx
Posts: 72
Joined: Thu Nov 08, 2012 11:45 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby kelltx » Fri Dec 07, 2012 11:32 pm

A week since surgery and I am between 1-2 bm a day.

Pain was okay but then DH made some spicy soup yesterday and I needed four hydrocodone all day. Today went back to bland soup and am at one pill so far.

Started going out yesterday. Accompanied DH yesterday and today when he went out to run errands. It was great. Compared to how active I was after the resection last month, surely I was way weaker in the first week than I am now. So this has been easier, even with the open surgery.

I keep forgetting to chew my fruits, and then remember Nicola writing everywhere chew chew chew.

Have a great weekend fighters!

kelltx
Posts: 72
Joined: Thu Nov 08, 2012 11:45 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby kelltx » Sat Dec 08, 2012 4:40 pm

jinxed it as soon as i wrote it -
had it loooooooose last nite twice
today i had a baguette for lunch maybe wrong choice - cuz pressure is high - even if no output darn!

SammyJ
Posts: 198
Joined: Wed Jul 25, 2012 5:03 pm
Facebook Username: Samantha.douglas

Re: Reversal Log: Experience,Problems, Q & A's

Postby SammyJ » Sat Dec 08, 2012 6:13 pm

I have gone 2 steps forward 2 steps back......last night 11pm - 2am backwards and forwards from the bathroom. Mind you i am eating whatever i want and went out all day yesterday with no issues so its not all bad. Back to boring foods today for me.
Diagnosed Stage 3A Rectal Cancer March 12, age 39
ULAR and temp ileostomy March 12
Folfox started April 12 , completed Oct 12.
NED 16/10/12
Ileostomy reversal 23 Nov 12....

User avatar
chemo sabe
Posts: 444
Joined: Fri Mar 09, 2012 9:01 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby chemo sabe » Sat Dec 08, 2012 6:40 pm

my reversal was Oct 19, 2012. I went back to work a week and half ago. I am unable to get a "complete evacuation" but when the urge to go comes on - it is quick. Prior to cancer, I was nice a regular, every morning, no problem. Now I have no idea when and I am under the fear of pooping myself. However, I am soooo much better than I was in October. I am ok with pumpkin pie and apple pie - blueberry pie sent me straight to the bathroom. Surgeon says to continue to stay away from fresh fruit and veggies. Having been on a low output diet since last Feb, that is not a problem. I continue the use of baby wipes and ointment. I carry the wipes in a sandwich bag and a bit of ointment in a pill box. I believe I am getting a tiny bit better each day. Work wants me to go back on travel next month and I sure hope I am up to it. But I am happy to be alive and hoping the cancer stays away.
64 year old male
Diagnosed Stage 3 Rectal Cancer - T3N1M0 - Oct 2011
28 radiation treatments with xeloda
Colon resection with ileostomy Feb 2012
8 Rounds of Xelox completed Sept 2012
Ileostomy reversal surgery Oct 2012
Incisional Hernia Repair Nov 2013

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby Badass » Sat Dec 08, 2012 6:45 pm

I might as well chime in too... day 11 post-surgery
Everything is fine in terms of well formed output, no diarrhea, sleeping well
Last two days have been annoyingly peppered with single log outputs all day long. Nothing urgent-- kind of like mini-clusters I guess.
Have really upped the psyllium and hoping that helps-- I have noticed it makes the poops bigger (as expected) so hoping that stretches out my new pouch.

Went a little crazy today with a vita-mix smoothie-- added raw spinach, carrot, whole orange, frozen mango and banana. Also had pizza with an eggplant topping (skin on :o !) so may pay for this later!

Jane
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)

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

Re: Reversal Log: Experience,Problems, Q & A's

Postby justin case » Sat Dec 08, 2012 7:44 pm

chemo sabe wrote:my reversal was Oct 19, 2012. I went back to work a week and half ago. I am unable to get a "complete evacuation" but when the urge to go comes on - it is quick. Prior to cancer, I was nice a regular, every morning, no problem. Now I have no idea when and I am under the fear of pooping myself. However, I am soooo much better than I was in October. I am ok with pumpkin pie and apple pie - blueberry pie sent me straight to the bathroom. Surgeon says to continue to stay away from fresh fruit and veggies. Having been on a low output diet since last Feb, that is not a problem. I continue the use of baby wipes and ointment. I carry the wipes in a sandwich bag and a bit of ointment in a pill box. I believe I am getting a tiny bit better each day. Work wants me to go back on travel next month and I sure hope I am up to it. But I am happy to be alive and hoping the cancer stays away.


You might try an Immodium in the morning, if your doctor approves :roll:
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

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby Badass » Sat Dec 08, 2012 9:09 pm

ChemoSabe, you might also want to consider using psyllium husk-- it is a soluble fiber that seems to slow things down. I may also add an immodium eventually (thanks, Michael) but I want to see what the psyllium does as I am gradually increasing the dose.

Jane
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)

kelltx
Posts: 72
Joined: Thu Nov 08, 2012 11:45 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby kelltx » Tue Dec 11, 2012 7:53 am

up all night clustering last two days. Skipped dinner last nite but that didnt help. Any advice how to avoid this?

SammyJ
Posts: 198
Joined: Wed Jul 25, 2012 5:03 pm
Facebook Username: Samantha.douglas

Re: Reversal Log: Experience,Problems, Q & A's

Postby SammyJ » Tue Dec 11, 2012 4:20 pm

Kelltx, sadly no advice from me. My poor colon clearly has jet lag, nighttime is toilet party time. Mind you so is daytime.

I had a very gassy day yesterday for the first time but without any changes in my diet. Difficult o manage while I was out and about but bloating is significantly reduced.

Desperately waiting on reply to your plea for advice kelltx......
Last edited by SammyJ on Tue Dec 11, 2012 5:08 pm, edited 1 time in total.
Diagnosed Stage 3A Rectal Cancer March 12, age 39
ULAR and temp ileostomy March 12
Folfox started April 12 , completed Oct 12.
NED 16/10/12
Ileostomy reversal 23 Nov 12....


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