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

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

Postby Badass » Fri Nov 30, 2012 3:28 pm

HI All,
I know others (Surrounded By Love ,for instance) have posted threads about their reversal experience and I thought I would share mine, as I have many questions myself and noticed others have had interest in knowing how it goes.
I got home from the hospital last night and felt like I had been hit by a truck. Felt much more sore at home. Then spent most of the night on the toilet (with new bidet seat, thank goodness!) with constant output.
I am on prescribed "Full Liquid Diet" with addition of a little toast, noodle and egg. Tomorrow, I will transition to Low Residue Diet
So Today,
Frequent output in the morning. Then after lunch, very little. Called surgeon to discuss last night and he wants to test for C. Diff (I am sure I don't have that) and suggests immodium if that happens again. I am also really, really bloated/swollen- have gained 6 pounds despite very low cal since Monday and can only wear stretch pants. Asked him about that- just wanted to know why and what to expect- and he suggested I speak to my PCP about diuretics. I found that answer confusing since he is also worried about dehydration. I think he and I communicate past one another on the phone sometimes and he tried to problem-solve when I am just checking on what's normal.
Feeling very, very crampy and bloated but incision pain is much better and I am dressed and doing the dishes etc. Feel energetic.

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
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Location: Texas

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

Postby RayGirl » Fri Nov 30, 2012 3:49 pm

i lived in fold down yoga pants for a few weeks after surgery. I just felt bloated and they were fast to drop in a hurry....

11 p.m. to 1:30 a.m were always by busiest bathroom times in the early months. It was like my body waited until I was relax enough go to sleep to say, yep now I'm comfortable enought to release everything. In the morning about twenty minutes after breakfast was a mini-cluster, but after lunch usually wasn't a big deal. Oatmeal for breakfast helped, I really noticed the mornings that I decided to try something different. :shock:

Good luck! and I'm impressed you are doing dishes, I tried to pawn all those chores off for weeks.
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."

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

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

Postby Badass » Fri Nov 30, 2012 4:04 pm

Thanks, RayGirl! What kind of oatmeal do you have? I am limited to instant right now per doctor's orders. Also, when you say "they were fast to drop in a hurry"-- do you mean the bloat?

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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BrownBagger
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Location: Central NYS

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

Postby BrownBagger » Fri Nov 30, 2012 4:15 pm

She's talking about getting her pants down fast enough to avoid loading them up, I think.

Sounds like you're doing alright. The first couple of weeks are rough. I just parked myself in a chair next to a bathroom because when you gotta go--you really gotta go, as you know. It gets slowly better over time. Immodium is a good thing to have on hand. Narcotic painkillers also slow your bowels down, so you can get some sleep, etc. Pay attention to what you eat (you are) and make a note of the effect different foods have on your digestive system. And finally, measure your progress week-to-week, because you're going to have good days and bad days punctuating the next few weeks. And--trust me on this--at some point in the not-so-distant future, you will produce a fully-formed turd (and be very happy about it). Just not yet.

Good luck, & keep us posted.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

justin case
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Location: Katy, Texas

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

Postby justin case » Fri Nov 30, 2012 5:07 pm

BrownBagger wrote:She's talking about getting her pants down fast enough to avoid loading them up, I think.

Sounds like you're doing alright. The first couple of weeks are rough. I just parked myself in a chair next to a bathroom because when you gotta go--you really gotta go, as you know. It gets slowly better over time. Immodium is a good thing to have on hand. Narcotic painkillers also slow your bowels down, so you can get some sleep, etc. Pay attention to what you eat (you are) and make a note of the effect different foods have on your digestive system. And finally, measure your progress week-to-week, because you're going to have good days and bad days punctuating the next few weeks. And--trust me on this--at some point in the not-so-distant future, you will produce a fully-formed turd (and be very happy about it). Just not yet.

Good luck, & keep us posted.



What the heck is a turd, is that a big boy poop? 8 months out, that's my new normal. Good luck Jane 8)
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: 1156
Joined: Sun Jan 15, 2012 11:42 am

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

Postby Badass » Fri Nov 30, 2012 5:54 pm

OK, so after all that action last night, my surgeon wants a stool sample to check for C-Diff and NOW I AM CONSTIPATED! Lab closes at 7 PM and he wants it tonight! Never was good with pressure. Is that normal to go from such frequency to not being able to produce. Feels lots of belly congestion and slight urge to go but nothing much :cry:
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)

sadysue
Posts: 965
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

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

Postby sadysue » Fri Nov 30, 2012 6:07 pm

Hi Jane! Sounds like you are feeling pretty good :D Keep it up! I felt good for the first week or two after reversal. I think my new plumbing was taking it's time waking up (had my ileo for 7 months) so there was no urgency or clustering in the very beginning. After the second week, things picked up and I was in the bathroom often. I wore yoga or sweat pants for a few weeks (easier to get off quickly) but got back into my jeans in about a month. For a few months, I wrote down everything I ate and how many times I used the bathroom per day. The only thing I learned from that exercise was that there was NO connection between bathroom use and what I ate :roll: I had days that I was in the bathroom 10+ times per day and other days that I was ok. I introduced good, old fashioned oatmeal (the kind you cook) into my diet every morning and started taking probiotics which helped too. I think at the end of about week 4 or 5, I felt I had good control most of the time although I was experiencing some clustering on and off. By the second/third month, I was doing anything I wanted to do and only occasionally was reminded that I no longer had a rectum. I am nine months past my reversal and still have some bad days (Thanksgiving was a reminder) but it's usually my fault. If I eat too much of something new, my system reacts! All in all, I am very happy with my new "normal." I think getting accustomed to new plumbing is not easy for most people but with time, education and patience, it sorts itself out and leaves us with a new "normal" that most of us can live with pretty easily :D :D :D Good luck in the upcoming weeks and I hope they are easy for you!
Mary Ann
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

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Stomatrooper
Posts: 487
Joined: Fri Dec 31, 2010 11:56 pm
Location: Auckland New Zealand

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

Postby Stomatrooper » Fri Nov 30, 2012 6:12 pm

rusuja wrote: Is that normal to go from such frequency to not being able to produce.


3 x days out I don't know if you could describe anything as normal (I was almost three days before anything started) - I can recall wondering what the hell was going on the first week and if I would ever get through.

2 x weeks may be a good turning point - my surgeon told me that the colon, which does the de-watering job, would take 2 x weeks to start working properly again - he wasn't far wrong.

Good luck.
John, Diag. 20 5 2010 @55
Rectal, 2cm dia, 3cm from anal verge
T2N0M0
5.5 Wk Chemorad
ULAR Oct 2010
Temp Ileo, infection; blockage; incisional hernia
Takedown Jan 2011
Hernia fix - June 2011
Clean CT 2011; 2012 & 2015
Clean scope May 2013

justin case
Posts: 4134
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

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

Postby justin case » Fri Nov 30, 2012 6:13 pm

rusuja wrote:OK, so after all that action last night, my surgeon wants a stool sample to check for C-Diff and NOW I AM CONSTIPATED! Lab closes at 7 PM and he wants it tonight! Never was good with pressure. Is that normal to go from such frequency to not being able to produce. Feels lots of belly congestion and slight urge to go but nothing much :cry:


Like he's not going to sleep if the lab doesn't get it tonight :evil: You can only do-do so much :roll:
Warm 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

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

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

Postby BrownBagger » Sat Dec 01, 2012 9:26 am

Lots of trips--not much output per. Sounds about right.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

Badass
Posts: 1156
Joined: Sun Jan 15, 2012 11:42 am

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

Postby Badass » Sat Dec 01, 2012 11:34 am

Thanks for all the posts, humor and normalizing of my experience.
Justin, you are right-- I dood all I could do so the dood should be happy!

Anyway, quick update on evening 3 and morning 4 post-op: had a tough gas filled evening which would result in Brownbagger's famous "fart or poop?" game and I would run to the bathroom convinced that I had lost control only to find it was simply gas. So, so far, continent. I would have enormous gassy events and sit on the toilet feeling like a big expulsion was coming and out would pop the tiniest little dime sized pellet-- but is was a formed pellet!

Belly was mostly quiet all night and was able to sleep and relax and not feel like a bm machine. Total break from patient status. I feel terrific today in terms of energy and belly comfort. Graduated to low-residue diet today and celebrated with banana and well-cooked broccoli and cauliflower crowns along with my morning oatmeal. Simple pleasures! Probably foolish to add three new foods at once and all of them fruit/veggies but feeling daring. Wow, if someone without crc read this last paragraph they might think I have a very limited life. :shock:

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: 4134
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

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

Postby justin case » Sat Dec 01, 2012 2:17 pm

Trust me. After the next few months, you'll have a hard time eating milk duds :shock:
Warm 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

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

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

Postby BrownBagger » Sat Dec 01, 2012 2:27 pm

Mine always looked like chips. Poop chips! All that work for one crummy little chip.

My biggest complaint--which continues in a very mild form--was never feeling like I was "done." Early on, I couldn't feel what was going on, either, which can be pretty annoying. Kind of like being blind or deaf, if you can dig the analogy.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

lauragb
Posts: 890
Joined: Sun Aug 28, 2011 5:25 pm

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

Postby lauragb » Sat Dec 01, 2012 3:21 pm

Congratulations on your reversal. It is an important milestone and yet a long road. Sounds like you are well-prepared. By the way, I like the subject line, Reversal Log, Yep a log would be nice you think while working so hard for pellets or milk duds. Anyway, my experience was that I was slow getting started and never really did have diarrhea or incontinence although I sure felt that urgency and discomfort. My issue was and still is a lot of work for so little action. Sounds like you are doing well starting different foods already. Keep hanging in there and just know you will be unpredictable for a while. We are all so different, I'm not sure I have advice for you at this point but just want you to know I'm thinking of you and hoping for a speedy adjustment.

Laura
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

Coppercent
Posts: 261
Joined: Thu Feb 23, 2012 4:00 pm

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

Postby Coppercent » Sat Dec 01, 2012 4:20 pm

Just wanted to say congratulations on having it over with and good luck through the adjustment period. Just make sure you follow your surgeons advice. I followed mine exactly and had a smooth transition. He said the adjustment period would go smoothly if I followed his advice and he was right.
07/15/11 Stage III Rectal, 08/11 - 09/11 Chemo/rad 11/11 LAR - Whole rectum gone, ostomy, hysterectomy
01/12 Port placed, 01/12 thru 06/12 Folfox, Xelox 10/03/12 Reversal, Clear scan
And then the story continues.
Currently, remission round two!


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