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

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cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

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

Postby cathy123 » Wed Jan 13, 2016 9:33 am

JDMNYC wrote:
Badass wrote:Just an update from me--- I started this thread around three years ago-- amazing to see it continue.


Saw surgeon on Wednesday. My complaints: insane frequency during the evenings (maybe 30 trips) and really bad pain, exceptional pain, as if I was passing broken glass, followed by spasms. She advised to start the Metamucil, try to eat small meals (I had hardly been eating during the day for fear of the pain) and gave me some ointments and pain meds (pain is thought to be from stool hitting microscopic tears in colon/remaining rectum/anus (tears from surgery and general disuse during ileostomy)). I started eating oatmeal, lentil soup, etc., along with Metamucil. Getting some bulk from it, and so far seems to reduce evening frequency from 30 to maybe 20. The pain is still pretty severe.

Only been reversed three weeks at this point, so I suppose there's no way through it but through it, but it's a lot less fun than I expected :shock:

Jim


Jim - someone may have recommended this already, but one thing that helps me a lot when I am in pain from too many trips to the bathroom is a sitz bath. It is just a plastic thing that sits over the toilet seat. I fill it with warm water and it is soothing. It also helps with cleaning up. A bath would accomplish the same thing but this is much quicker. I think I got mine for $20 on Amazon.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

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

Postby JDMNYC » Wed Jan 13, 2016 3:43 pm

cathy123 wrote:Jim - someone may have recommended this already, but one thing that helps me a lot when I am in pain from too many trips to the bathroom is a sitz bath. It is just a plastic thing that sits over the toilet seat. I fill it with warm water and it is soothing.


Thanks Cathy - Just ordered mine!

Jim
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

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

Postby JDMNYC » Wed Jan 13, 2016 3:46 pm

Badass wrote:Hi Jim,

Sorry you continue to have problems-- and I will be curious as to whether foregoing lentils improves the situation.

Lentil Elimination= Less Elimination :?: :shock:

As to Heather's - I followed the directions on the bag: 1/2 teaspoon 2x a day. I upped it but then got diarrhea but it may have been another trigger (likely). I was very responsive to the 1/2 teaspoon and moved up slowly. I would suggest the same to you as we LAR folk have our own idiosyncratic patterns. I would not set a particular target goal on the dose.

Let me know how it goes for you-- I am very interested and hope you get some relief soon!

Jane


Thanks Jane - eliminating the lentils seems to help the frequency issues involved in eliminating the lentils :D I will go slow with the Heathers - basically, my few days of trying to eat a pre-diagnosis healthy diet seemed to have caused quite a few issues - going to be much more conservative going forward. I will let you know.

Jim
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

CatHair
Posts: 44
Joined: Mon Aug 17, 2015 11:09 pm

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

Postby CatHair » Thu Jan 14, 2016 7:25 pm

Hi, folks. Six weeks post-reversal and today...today...TODAY...after a "quiet" morning and some unusual but brief cramping in the kishkas after lunch, I had the most copious, formed, abundant, and utterly satisfying single s**t I've had in at least six months. Wow. There were just a few more visits to the loo the rest of the afternoon to finish it off, but I felt like a new woman. All that without a rectum! I am proud of my colon for stepping up to the task.

Could it have been the oat bran wafers I eat when the urge for a sweet hits? The increase in Metamucil from the 1/4 tsp start to 1 1/2 tsp, twice daily? Eating very little the night before? I do not know. All I know is that as far as living in the moment goes, this afternoon's experience was mighty fine.

May we all enjoy such primal pleasure.
F 55 at Dx
Dx rectal cancer 7/22/2015
LAR with temp ileostomy 8/31/2015: T2N0M0
Ileostomy reversal 11/30/2015
NED 7/15/2016
Work full time, physically active
Wife, mom of two sons now 21 and 17 plus cats and a dog, daughter of elderly parents
Past marathon walker
Emotional & logistical core of family

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

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

Postby JDMNYC » Thu Jan 14, 2016 7:31 pm

CatHair wrote:Hi, folks. Six weeks post-reversal and today...today...TODAY...after a "quiet" morning and some unusual but brief cramping in the kishkas after lunch, I had the most copious, formed, abundant, and utterly satisfying single s**t I've had in at least six months. Wow. There were just a few more visits to the loo the rest of the afternoon to finish it off, but I felt like a new woman. All that without a rectum! I am proud of my colon for stepping up to the task.

Could it have been the oat bran wafers I eat when the urge for a sweet hits? The increase in Metamucil from the 1/4 tsp start to 1 1/2 tsp, twice daily? Eating very little the night before? I do not know. All I know is that as far as living in the moment goes, this afternoon's experience was mighty fine.

May we all enjoy such primal pleasure.


Four weeks post-reversal today - I am waiting for that moment (it's an odd club to which we belong). Congratulations!
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

ozziej
Posts: 217
Joined: Thu May 21, 2015 8:35 pm

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

Postby ozziej » Fri Jan 15, 2016 5:25 am

Yay CH yes that is a sweet sensation. .
So pleased for you
Jan :)
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

TracieLynn
Posts: 46
Joined: Thu Mar 19, 2015 2:00 pm

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

Postby TracieLynn » Fri Jan 15, 2016 6:45 pm

Just an update, I'm 18 days post reversal and feel great!! The surgery and recovery was as expected (tired and sore) butt once I took some MoM per dr suggestions-things started rolling with some regularity. Don't get me wrong-I'm still going to the bathroom 5-10x a day, sometimes with gas just to be safe. Butt-I am finding my diet is keeping me pretty regular. Some sense of urgency but it usually passes and I can hold it. I've been out at the mall, grocery store, etc testing and so far so good! Very pleased so far as mine was rectal and it's much shorter now. Just wanted to share because I read so many stories where it was tough for people. I haven't used any of the diapers or butt creams at all!! One note-I did do kegels pretty regularly during my 6 month ostomy window. Hope this helps someone!!
43 yr old Wife to DH Stage IIIB w/one Tumor Deposit
1/17 lymph nodes
Low RC Dx 2.26.15 CEA 19.5
Xeloda and Radiation 3.24-5.1
May 2015 break for recover CEA 5.5
LAR June 2015 w/temp ileostomy CEA 3.3
Xelox Aug 2015 and switch To Northwestern
09/2015 blackout, blood clot, seven stitches, on blood thinners
CT scheduled for 12/8/15
Feb 2016 Met to liver. CEA at 3.1
Liver resection @NW 3/23/16
VATS for Lung 5/6/16
More spots popping up lungs
Folfiri+Avastin Started Sept 2016-current (April 2017)

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

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

Postby cathy123 » Fri Jan 15, 2016 7:12 pm

Cat hair and TracieLynn. So glad you are doing well. Sounds like really good progress!
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

justin case
Posts: 4188
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

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

Postby justin case » Fri Jan 15, 2016 8:51 pm

CatHair wrote:Hi, folks. Six weeks post-reversal and today...today...TODAY...after a "quiet" morning and some unusual but brief cramping in the kishkas after lunch, I had the most copious, formed, abundant, and utterly satisfying single s**t I've had in at least six months. Wow. There were just a few more visits to the loo the rest of the afternoon to finish it off, but I felt like a new woman. All that without a rectum! I am proud of my colon for stepping up to the task.

Could it have been the oat bran wafers I eat when the urge for a sweet hits? The increase in Metamucil from the 1/4 tsp start to 1 1/2 tsp, twice daily? Eating very little the night before? I do not know. All I know is that as far as living in the moment goes, this afternoon's experience was mighty fine.

May we all enjoy such primal pleasure.

It wont be a steady attribute just yet, and after almost 4 years, sometimes I'm just awed, at what must have come out of my brain :roll: :roll: :roll: :roll: :roll:
Bro nut
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

EverySunriseCounts
Posts: 19
Joined: Sun Jan 17, 2016 1:25 pm

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

Postby EverySunriseCounts » Sun Jan 17, 2016 4:18 pm

Hi all,
Newbie here. My husband was diagnosed with stage IV in Sept 2014. After some missteps, chemo *seems* to be working. Surgical oncologist says she'll be ready to consider ostomy reversal after two stable scans, and he's had one. We are a long way from out of the woods, but I like to think positive. I've been reading this thread but wondering...
--How long is the hospital stay for a reversal? I realize YMMV (your mileage may vary) but what have various people experienced?
--How long is the actual surgery itself? 15 minutes? An hour? Three hours? All day?
--What does the scar look like? I'm not worried about the esthetics--I want my sweetie ALIVE, and the scars are badges of honor. But is it round, straight, what?
I'm getting a good sense of the variation of experience for after the surgery, and am beginning to be prepared for what to expect, if we are lucky enough to get that far. He still has a rectum and most of his colon, so hopefully if he gets the surgery his experience will be on the easier side of things.
Anyway, any recollections you can provide of the surgery itself (or pointers to where someone else has) would be much appreciated.. thanks!
Partner:
-Diagnosed with Stage IV CRC 09/14, liver,lymph mets
-Started Folfox
- Emergency surgery 10/14, removed colon tumor, temp ileostomy
- New abdominal tumor 05/15 changed to Folfiri
- Added Avastin 09/15
- Stable scan (liver mets still present) 11/15
- Stable scan 02/16; chemo halted 03/25
-Ostomy reversal 05/16

ozziej
Posts: 217
Joined: Thu May 21, 2015 8:35 pm

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

Postby ozziej » Sun Jan 17, 2016 8:45 pm

Hi
I had a reversal in May 2015. I had the surgery on a Saturday and I was home on Wednesday. Just be aware that days in hospital will depend on how long it takes for bowels to get moving again. The surgery took about an hour. Pain was much less than with my resection (I had open surgery so now sport a very long vertical abdominal scar). The surgeon left the stoma wound top layers open to prevent infection. .just covered with a combine dressing. I was able to let the water run over it in the shower and it took about two weeks to heal. I now have a horizontal scar about 4 inches long so I look a bit like someone has been playing noughts and crosses on my tummy. I have no rectum so bowel management has been a challenge but it now much improved. As your DH still has his rectum and most of his colon hopefully his experience will be much better. Wishing you and DH all the best for the reversal.
Jan :)
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

EverySunriseCounts
Posts: 19
Joined: Sun Jan 17, 2016 1:25 pm

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

Postby EverySunriseCounts » Mon Jan 18, 2016 8:26 am

Thanks! That is most helpful.

DH has a lovely, gorgeous, bow-to-stern horizontal scar from emergency surgery in 2014. If we get to a point where he gets an ostomy reversal, the horizontal one will complement it nicely!

Seriously.. I don't know if this is the place to say this, but as the other half of a survivor so-far, there is nothing more beautiful to me than the scar and yes, the ostomy. Every time we change the bag I thank the little stoma for saving his life. I like to think that it winks back at me in response. And again, sorry if this isn't the place to say it. It's just comforting to be around people who have been there and understand...
Partner:
-Diagnosed with Stage IV CRC 09/14, liver,lymph mets
-Started Folfox
- Emergency surgery 10/14, removed colon tumor, temp ileostomy
- New abdominal tumor 05/15 changed to Folfiri
- Added Avastin 09/15
- Stable scan (liver mets still present) 11/15
- Stable scan 02/16; chemo halted 03/25
-Ostomy reversal 05/16

MissMolly
Posts: 455
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Mon Jan 18, 2016 8:56 am

EverySunriseCounts wrote:as the other half of a survivor so-far, there is nothing more beautiful to me than the scar and yes, the ostomy. Every time we change the bag I thank the little stoma for saving his life. I like to think that it winks back at me in response. And again, sorry if this isn't the place to say it. It's just comforting to be around people who have been there and understand...


I agree that stomas deserve their rightful moment of recognition and heartfelt Thank You. I thank my stoma, a little turtleneck of intestine, almost every day for giving me a second chance at life.
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Buckeye
Posts: 109
Joined: Mon Jan 18, 2016 7:02 pm

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

Postby Buckeye » Mon Jan 18, 2016 7:09 pm

Having my reversal next week. A little nervous about my new bathroom habits. Most of my rectum has been removed. I also have a mild stricture at my colo-anal anastomosis which the surgeon will use a ballon to open up while reversing my stoma. Anyone that has had most of their rectum removed how long before you become somewhat normal. I drive for a living and this scares me, because access to a bathroom not always easy.
Dx 10/20/15 stage 1 T1N0M0 1.3cmx1.1cmx1cm low grade ( well to moderately differentiated) Rectal cancer age 47
Loving Husband and father of two girls age 19 & 15 Sole income provider
CEA <0.5
CT, MRI and PET show no metastatic spread
LAR Laparoscopic TME 11/30/15 with Illo
Pathology clean no lymph node or vascular involvement. Confirmed Stage1
No chemo/rad cancer free now and forever.
Illo reversal 01/26/16

ozziej
Posts: 217
Joined: Thu May 21, 2015 8:35 pm

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

Postby ozziej » Tue Jan 19, 2016 6:32 am

Hi Wally,
Unfortunately it seems to be a bit of a lottery with regard to post reversal return to 'normal'. I have seen posts from people who say they were back to normal within a couple of weeks and eating their normal diet. At the other end of the spectrum, there are people for whom things never got better and they opted for a permanent colostomy. And then, as in all bell curves, there is everything in between. If you read through this thread you will see the range of experiences. I have seen recent research that suggests that about 90 percent of people who had rectal resection will have post-reversal issues. However, there are always outliers, so hopefully you're one of them, only on the positive side rather than the negative one. Best wishes for a successful reversal.
Jan :)
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )


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