Reversal is Over

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
juliej
Posts: 2878
Joined: Thu Aug 05, 2010 12:59 pm

Re: Food-Toilet-Exercise Log

Postby juliej » Thu Feb 08, 2018 4:01 pm

O Stoma Mia wrote:...
Food-Toilet-Exercise Log- I have a Food-Toilet-Exercise log that I used for the first couple of years after reversal. It had three panels. In each of the panels I had items organized by time, where each item could have several subscripts to further describe the item. For example, in the Toilet log I used the Bristol Stool Chart for describing the type of stool, but I also had other subscripts, like 'size of stool', 'color', 'level of urgency', and 'time on toilet', etc. It was the same for the other panels: Each item entered in the spreadsheet had multiple subscripts.

The three panels were then interleaved and displayed on a master timeline so that I could see the overall pattern.

I haven't used my spreadsheet for a couple of years now, because my situation has stabilized, and I now know all of my bowel-movement trggers by heart. .But when I was first starting out, I used the spreadsheet on a daily basis for planning purposes.

O Stoma Mia, this is brilliant! I kept all my labs in spreadsheets. Hell, I even kept track of my tumors in Excel, noting the change in size of each tumor after every scan. But I never thought to use a spreadsheet for post-reversal potty tracking! :D I just used basic reflex action like when you touch something hot -- "nope, I wasn't ready to eat spicy quesadillas yet" -- and then avoided the offending food for two weeks or so when I'd try it again. Your approach is much more logical. I wish I'd thought of it... :roll:

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 9/14/2018, CEA<1

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Reversal is Over

Postby Aqx99 » Thu Feb 08, 2018 10:12 pm

NHMike wrote:Does the reversal surgery normally take four days in the hospital or is that due to the loop illeostomy?


My surgeon told me beforehand that it is normally a 3 day stay, barring complications. I was there almost exactly 72 hours, even with the extra stuff that happened to me. Surgery was at noon on Tuesday, I was discharged around 11am on Friday.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

NHMike
Posts: 1843
Joined: Fri Jul 21, 2017 3:43 am

Re: Reversal is Over

Postby NHMike » Thu Feb 08, 2018 10:17 pm

Aqx99 wrote:
NHMike wrote:Does the reversal surgery normally take four days in the hospital or is that due to the loop illeostomy?


My surgeon told me beforehand that it is normally a 3 day stay, barring complications. I was there almost exactly 72 hours, even with the extra stuff that happened to me. Surgery was at noon on Tuesday, I was discharged around 11am on Friday.


Thanks. I was under the impression that it was outpatient stuff. I'll have to plan for more I guess. I meet with the surgeon in March and I guess she'll set my expectations.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Reversal is Over

Postby Aqx99 » Thu Feb 08, 2018 10:23 pm

NHMike wrote:
Aqx99 wrote:
NHMike wrote:Does the reversal surgery normally take four days in the hospital or is that due to the loop illeostomy?


My surgeon told me beforehand that it is normally a 3 day stay, barring complications. I was there almost exactly 72 hours, even with the extra stuff that happened to me. Surgery was at noon on Tuesday, I was discharged around 11am on Friday.


Thanks. I was under the impression that it was outpatient stuff. I'll have to plan for more I guess. I meet with the surgeon in March and I guess she'll set my expectations.


They actually removed 18.5cm of my small intestine in the process. I don't know if that is normal or not, I only found out about it by reading my pathology report online.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Reversal is Over

Postby rockhound » Thu Feb 08, 2018 11:24 pm

NHMike wrote:
Aqx99 wrote:
NHMike wrote:Does the reversal surgery normally take four days in the hospital or is that due to the loop illeostomy?


My surgeon told me beforehand that it is normally a 3 day stay, barring complications. I was there almost exactly 72 hours, even with the extra stuff that happened to me. Surgery was at noon on Tuesday, I was discharged around 11am on Friday.


Thanks. I was under the impression that it was outpatient stuff. I'll have to plan for more I guess. I meet with the surgeon in March and I guess she'll set my expectations.


I was in the hospital for ~4 days; really depends on how fast your bowels start working again. They are not going to let you leave until things are moving! It was a much easier recovery, surgery-wise, than the resection. Was up and about pretty soon after getting to my room after surgery and I was so much more mobile.
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
11/18 - CT, NED

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Reversal is Over

Postby Aqx99 » Sat Feb 10, 2018 11:26 am

I had a very informative session with my pelvic physical therapist yesterday. She taught me the massage technique to help me have an emptying bowel movement, instead of clustering. It will take some practice to get it right, but I could tell it helped this morning.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

User avatar
susie0915
Posts: 872
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal is Over

Postby susie0915 » Sat Feb 10, 2018 5:15 pm

I thought the pelvic floor therapy was very helpful. Did she tell you to get a squatty potty. I found that to be very helpful.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only 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
11/18 CEA .6

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Reversal is Over

Postby Aqx99 » Sat Feb 10, 2018 8:26 pm

susie0915 wrote:I thought the pelvic floor therapy was very helpful. Did she tell you to get a squatty potty. I found that to be very helpful.


Yeah, she told me to get one or use a stack of books or shoe boxes at my first visit. I bought one for my master bathroom. I was amazed at how it helps open you up.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

User avatar
susie0915
Posts: 872
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal is Over

Postby susie0915 » Sun Feb 11, 2018 8:20 am

Aqx99 wrote:
susie0915 wrote:I thought the pelvic floor therapy was very helpful. Did she tell you to get a squatty potty. I found that to be very helpful.


Yeah, she told me to get one or use a stack of books or shoe boxes at my first visit. I bought one for my master bathroom. I was amazed at how it helps open you up.

Yes I have one in my master bedroom as well. I also got one on amazon that I can travel with. It folds down flat for easy packing. Really does help with evacuation.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only 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
11/18 CEA .6

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Reversal is Over

Postby Aqx99 » Sun Feb 11, 2018 11:37 am

The massage she taught me seems to be working. It will take a while to perfect the technique, but I am getting there. Yesterday I had a much larger movement than normal after I massaged. This morning, I started passing gas while massaging. I'm hoping I can eventually get to where I empty out completely and don't have to worry about going until after my next meal.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

heiders33
Posts: 314
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal is Over

Postby heiders33 » Sun Feb 11, 2018 11:48 am

I'm going to have to learn this massage technique!
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

User avatar
susie0915
Posts: 872
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal is Over

Postby susie0915 » Sun Feb 11, 2018 12:32 pm

Pelvic floor therapy is really beneficial. You should ask about it after your reversal.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only 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
11/18 CEA .6

User avatar
Atoq
Posts: 325
Joined: Wed Oct 25, 2017 9:31 am

Re: Reversal is Over

Postby Atoq » Sun Feb 11, 2018 1:54 pm

heiders33 wrote:I'm going to have to learn this massage technique!

Me too! :D

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6
19.11.18 clear coloscopy

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Reversal is Over

Postby Aqx99 » Sun Feb 11, 2018 2:01 pm

Atoq wrote:
heiders33 wrote:I'm going to have to learn this massage technique!

Me too! :D

Claudia


PM me your email addresses and I will scan and send you the sheet she gave me detailing the massage.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Abdominal massage for constipation

Postby O Stoma Mia » Mon Feb 12, 2018 1:57 am

Is your sheet of massage instructions something like this one?

Abdominal massage for constipation
https://www.guysandstthomas.nhs.uk/resources/patient-information/gi/abdominal-massage-for-constipation.pdf

or this one?

Abdomen self massage for constipation
http://www.youtube.com/embed/N39GIWquhWg/?rel=0&autoplay=1


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], macpudd and 55 guests