Reversal Thread

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Basil
Posts: 243
Joined: Thu Mar 16, 2017 12:33 pm

Reversal Thread

Postby Basil » Fri Sep 22, 2017 10:30 pm

We have one of these and it is excellent. I'm starting another because experiences vary and mine might (or might not) be different. Any case, I'm a male, 40 years old and my treatment went well. Now the final hurdle other than surveillance after LAR syndrome.

I had 90% of my rectum removed, which is a problem. I did not have radiation, which is a plus. My temp bag was in place for less than two months so hopefully my remaining bits are not too far out of practice.

Reversal is Monday. I had a barium enema today and got my colon moving for the first time in a while. When I was done, I had significant barium still in my colon. I was offered a diaper but declined.

The good nenes is I handled the output well. No accidents or anything. The bad news is I felt the need to be near a toilet for about eight hours. The urge would come but not be overwhelming.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear

JJH
Posts: 167
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: Reversal Thread

Postby JJH » Fri Sep 22, 2017 11:46 pm

Thank you for starting this thread. It should provide a somewhat unique perspective, since you are a Rectal Cancer patient but without the usual neoadjuvant radiation and without the usual long 6 to 8 month span with a temporary ileostomy. Your ileostomy experience was only about 2 months long, so there might be something to learn from this, and this might also shed some additional light on the benefits of a PROSPECT trial approach to neoadjuvant treatment protocols. Maybe this and a shorter post-surgery adjuvant chemo regimen may eventually become a standard of care for a certain class of Rectal Cancer patients.A lot of people would be in favor of that.

Good luck on your up-coming surgery and recovery.

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susie0915
Posts: 785
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Thread

Postby susie0915 » Sat Sep 23, 2017 8:32 am

I only had my ileo for 5 weeks. Developed a bowel obstruction so when surgeon went in to remove scar tissue he reversed the ileo since he said no sense in going back later. While in the hospital did the barium enema and had xray to check to be sure everything was healed and no leakage before he reversed. That was the one positive that came out of 3 1/2 weeks in the hospital dealing with the blockage as the ileo gave me nothing but problems. The reversal did not make adjuvant chemo easy as I experienced diarrhea. I then understood why surgeon originally didn't want to reverse until after chemo.

Before beginning chemo and after finishing, I did feel like my bm's were doing okay although could be small and frequent but pretty much formed. After trying different things for over a year I went to the University of Michigan Bowel Control clinic and was so glad I did. The doctors there gave me many options to improve my quality of life and I feel so much better physically and mentally. I'm sure you will do great, but don't be afraid to ask for help as there are many things you can do to improve your situation if you feel the need. Not having radiation or having to deal with adjuvant therapy is such a plus.

Good luck with your surgery, I'm sure you cannot wait.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Basil
Posts: 243
Joined: Thu Mar 16, 2017 12:33 pm

Re: Reversal Thread

Postby Basil » Sat Sep 23, 2017 6:26 pm

You couldn't be more right. I have been counting the days for weeks and I'm tickled pink knowing in about 48 hours I'll be watching the Cowboys game on hospital tv without the bag and with no stoma.

I'm well aware there is a good chance that I'm in for some tough times but my post-diagnosis journey has to date been mostly all good. Crossing my fingers that my luck holds.

God, if you'd told me a 6.5 months ago that I'd be reporting to the internet on the frequency and quality of my bowel movements, I'd have been horrified. Of well, cancer can strip some of your dignity but I'll take it with a smile so long as I'm reporting live from NEDville.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear

Lee
Posts: 5602
Joined: Sun Apr 16, 2006 4:09 pm

Re: Reversal Thread

Postby Lee » Sat Sep 23, 2017 7:16 pm

Good luck tomorrow, I hate prepping. And all the best on Monday.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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Shana
Posts: 383
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Reversal Thread

Postby Shana » Sat Sep 23, 2017 11:36 pm

Good luck!

Hope everything goes smoothly for you :D
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

AbbyDoo
Posts: 134
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: Reversal Thread

Postby AbbyDoo » Sun Sep 24, 2017 2:26 am

Hey basil,
Wishing you the best of luck Monday and your good luck continues.
I'm really courious on how you make out with your reversal. I guessing you will be way better off than us who have been threw radiation. And the short time with the ileostomy has to be a plus.
I was so excited for my reversal surgery, I remember counting out bags a month ahead and putting them in a separate box, I really wanted to do a belly flop on the bed,shower without pooping all over your feet is ausome. Then there is running around the house naked just because you can. :shock: and I still do :D
Best advice I can give you is take it slow on introducing new food. keep your diet bland for as long as you can.
Once again good luck Monday
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

88kaw88
Posts: 6
Joined: Sun Sep 24, 2017 7:41 am

Re: Reversal Thread

Postby 88kaw88 » Sun Sep 24, 2017 7:50 am

Good luck to you...I literally just joined this board by looking up info on life after reversal.

justin case
Posts: 4208
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Reversal Thread

Postby justin case » Sun Sep 24, 2017 12:25 pm

I had my temp for 3 weeks. Most people wait for 6 to 8 months, I also had a blockage so it was taken care of, along with reversal. From my side of the situation, you'll go through much of the same things either way. The good news, is that all this stuff has happened before the end of the year, and your out of pocket cost has probably hit it's max. I was left with 3cm from the anal verge, and as time goes by the straight connect needs time to expand to hold more waste .
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

88kaw88
Posts: 6
Joined: Sun Sep 24, 2017 7:41 am

Re: Reversal Thread

Postby 88kaw88 » Sun Sep 24, 2017 12:49 pm

Basil,

Please keep updated, I am about to start chemo Wednesday at MD Anderson, then hopefully reveresed after treatment...currently have a temo ileo. I am 38, with a 3 year old and 3 month old twins...hoping I can get back to somewhat normal life...

Basil
Posts: 243
Joined: Thu Mar 16, 2017 12:33 pm

Re: Reversal Thread

Postby Basil » Sun Sep 24, 2017 12:59 pm

Lee wrote:Good luck tomorrow, I hate prepping. And all the best on Monday.

Lee


My prep consists of no solid food after midnight tonight and nothing after 7:30 tomorrow morning. Surgery is 11:30 a.m. Much more agreeable than the LAR prep.

Last time my bowels didn't really fall asleep at all. They were hearing digestive sounds as soon as I was out of recovery and in my room on the floor, so things may move along pretty quickly if the pain meds don't back things up too much.

My surgeon said I can eat whatever I want from the get go but I'm going to start of with BRAT for a few days and start reintroducing some basics to hopefully find a baseline diet and get me out and about more quickly.

The barium enema seems to have stimulated my colon because I'm having some discharge the natural way and I hadn't seen any of that since the ileo was installed.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear

User avatar
susie0915
Posts: 785
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Thread

Postby susie0915 » Sun Sep 24, 2017 1:21 pm

Oh that's not too bad. When I had my reversal was in the hospital for bowel blockage with an ng tube in my nose to my stomach, so I didn't have to prep. I guess I assumed it would be like the prep for resection. But makes sense only dealing with the small bowel right? Good Luck again. Think this time tomorrow no bag. I remember waking up from surgery and the first thing I did was feel to be sure the bag was gone.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

JJH
Posts: 167
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Reversal /takedown threads

Postby JJH » Sun Sep 24, 2017 1:30 pm

You may also want to have a look at some of the other reversal logs / diaries / mini-blogs that have been created here on Colon Club:

Takedown Countdown! - BrownBagger

Takedown Info - SurroundedByLove

Rectal-What's is "normal" like after my ostomy is reversed? - katykards1

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

rockhound
Posts: 106
Joined: Fri Jul 14, 2017 5:00 pm

Re: Reversal Thread

Postby rockhound » Sun Sep 24, 2017 1:34 pm

Hi all,

Had my reversal on wed afternoon, head home from hospital in a few hours. It's not early as painful for me as original LAR but I'm still pretty bloated around my stomach from gas and I guess the surgery. Not that hungary either. But poop! Last night it finally started and I can at least feel when something is ready to go- not sure how long I can hold, the two hour drive home will be a test. Nice to be free of the bag also, will take some time to recover again. Port taken out also, which was nice too - both oncologists said to do it and no reason to wait.
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
1/18 - 5mm polyp removed during colonoscopy
5/18 - CT, NED

JJH
Posts: 167
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: Reversal Thread

Postby JJH » Sun Sep 24, 2017 1:52 pm

Basil wrote:... My surgeon said I can eat whatever I want from the get go...

That's the same thing that my doctor told me after my reversal, but he was wrong.


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