Reversal surgery

Please feel free to read, share your thoughts, your stories and connect with others!
heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Reversal surgery

Postby heiders33 » Fri Jan 26, 2018 5:49 pm

I met with my colorectal surgeon today to schedule my reversal. It will be on March 12. Flex sigmoidoscopy and enema study will be on March 1. I have to get my medical clearance somewhere in there, so hopefully my blood counts will be OK (chemo ends on February 20.) I’ll probably update this thread on my reversal recovery.
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
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Publications for reversal surgery and LARS

Postby O Stoma Mia » Sat Jan 27, 2018 2:55 pm

With your reversal scheduled for March, there is still some time for you to read up on LARS and other post-reversal bowel control issues.

The Beating Bowel Cancer website has a number of interesting and informative publications in this area, including the following Patient Booklet and Factsheets.:

Regaining Bowel Control V1.1
Stoma Reversal V5.0
Bowel Control Exercises v5.0

The link for accessing the downloads for these and other publications is here:

https://www.beatingbowelcancer.org/how-we-can-help/booklets-factsheets/

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Sun Jan 28, 2018 1:06 pm

Thank you! I will look into those. I’ve been doing pelvic floor exercises all along and can feel myself getting stronger. I have a feeling,though, that frequency will be an issue like it was pre-surgery.
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

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Sun Jan 28, 2018 4:37 pm

Related to this topic, it's interesting how the Coloplast Mio ostomy products have not worked for me at all. I heard that they were the "nicer brand," and yet their adherence to my skin is lacking. I think it has something to do with the flatness of bags which encourages pancaking around the stoma, which in turn encourages leaks. Meanwhile, the Hollister products which I received in the hospital have passed with flying colors. They are more awkward and bulky, but they don't leak. The convex skin barrier works best for me. Just goes to show that each person needs to figure out what's best for them. I've had some horrific leaks with Coloplast.
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

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Sat Feb 03, 2018 8:43 am

I’ve had a couple of bad blowouts this week - can’t wait to have this thing reversed even though I know it could be hard. I finally got more convex wafers in the mail which seem to work better for me so I will stick with these through the end.

My onc said my liver enzymes are a little elevated from my blood test a few weeks ago. I’m having it tested again and will call him Monday to get results. If they are still elevated I will need a scan. I am so worried they will find something bad! I know elevated enzymes can be caused by many things, but still I worry.

Also my platelets are low, and if they are still low when I go in next Wednesday then my last round will likely be cancelled. It’s hard to plan for the next few weeks when I don’t know what will happen. I guess this is the ups and downs of cancer.

Anyway, just unloading my thoughts here. I feel so unsettled and it’s difficult to concentrate on anything.
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: 865
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal surgery

Postby susie0915 » Sat Feb 03, 2018 9:23 am

I only had my ileo 5 weeks as I had a bowel blockage and surgeon decided to reverse when he had to go in a remove scar tissue. I never experienced blowouts during that time, which must be so awful. I did have issues with my stoma bleeding which no one could figure out why. I was pretty pleased when my surgeon said he was going to reverse the ileo if he had to do surgery for the blockage. Even though it did make it difficult during chemo(diarrhea) I made it through. I know you are probable getting anxious and excited to have your reversal. LARS can be a problem, but many do well right out of the gate. Others do well with meds and/or diet. It takes a little time to figure out what will work best for you, but there are many options. Good luck with your upcoming tests.
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

MissMolly
Posts: 564
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Reversal surgery

Postby MissMolly » Sat Feb 03, 2018 10:13 am

Hi Heidders:
heiders33 wrote:it's interesting how the Coloplast Mio ostomy products have not worked for me at all. I heard that they were the "nicer brand," and yet their adherence to my skin is lacking. . . Meanwhile, the Hollister products which I received in the hospital have passed with flying colors . . . Just goes to show that each person needs to figure out what's best for them.


Your assessment is spot-on accurate. Finding the ostomy pouching system (wafer, bag, adaptic barrier ring, skin protectant, and other accessory products) is very much an individual process of discovery. What may be an awesome product/brand for one person may be a failure and disappointment for another person.

The issue of a wafer’s competent adhesion to the skin is especially vexing. Every person has unique skin qualities at a cellular level. Oily skin, dry skin, thin skin with a lower constitute of collagen, supple skin that glides and mobilizes, tough skin that is coarse and tethered, and more. Each ostomy manufacturer’s wafer has a unique composite that defines the brand. Ostomy wafers are a blend of pectin and elastic polymers in a hydrocolloid matrix.

The bonding/seal of an ostomy wafer to the skin is enacted by the warmth of the body’s temperature in contact with the hydrocolloid matrix. To optimize wafer adhesion avoid any strenuous movement of the torso for 20-30 minutes after applying. Adding an exogenous heat source to the wafer/skin interface when applying a new wafer is also beneficial (ex. A hair dryer on warm setting; placing a microwaveable warm buckwheat pack on the abdomen).

Wafer leaks are a distressing aspect of having a stoma/ostomy residing in one’s abdomen. A “blow-out” is at the far end of the spectrum of the magnitude of leaks and are a leak’s worst case scenario. I feel for you for having endured several blow-outs. It is analogous to a volcanic eruption of a stoma. The mess factor and indignation is significant.

It may help you to know that seasoned stoma veterans also have the misfortune of experiencing wafer blow-outs. I have had my end ileostomy now for about 6 years and I have had 2 blow-outs this week. This is unusual for me to have a blow-out, let alone 2 in two days. One of the blow-outs was so extensive that I decided to throw away my poop-drenched pajama bottoms and socks. Know that you are not alone.

I will be sending good karma into the universe for you for a successful and complication free reversal.
Karen
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.

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Mon Feb 05, 2018 1:16 pm

I just got a call from my doctor that my liver enzymes are now trending downward. They were pretty high in December but now have gone down. They are still a little above normal, but he said these types of trends are normal and we won't worry about doing a scan right now. If it persists we may do a scan later. I'm relieved to have this little hiccup behind me for now and can focus on my last (!) round of chemo on Wednesday, which may or may not happen depending on platelet counts.
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
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Comprehensive Survivorship Care Plan

Postby O Stoma Mia » Mon Feb 05, 2018 1:52 pm

heiders33 wrote:.. and can focus on my last (!) round of chemo...

After your last round of chemo and then your reversal surgery in March, who will be in charge of your comprehensive 5-year survivorship plan? Your oncologidt? Your surgeon? Your GP? Hopefully it wil be somebody who cares about your overall QOL over the next 5 years

Somebody needs to be in charge and needs to create a comprehensive Survivorship Care Plan (SCP) for you. Who will that be?

NOTE: The "SCP- Survivorship Care Plan" is being featured in a special session in the up-coming Call-on-Congress meeting:

Treatment Summaries and Survivorship Care Plans (TS/SCPs): Symptom Management and Surveillance
Session Presenter:
Andi Dwyer, University of Colorado
Director of Health Promotion, Fight Colorectal Cancer


How are colorectal cancer survivors supposed to manage their medical care after treatment ends? It is recommended by several professional cancer organizations that at completion of treatment, patients receive a summary of what treatments they have had in addition to a detailed plan of ongoing care from their providers. Did you leave with a clear plan? The truth is, a majority of patients are leaving with more confusion than clarity as it relates to their follow up and management post treatment. In this unique breakout session Andi will facilitate a discussion about the importance of survivorship care planning.

Lively, interactive discussions will cover:
• What is a TS/SCP
• The recommended follow-up care for colorectal cancer survivors
• Responsibilities of different providers (oncologist, primary care, etc.)
• Where to go for resources

Ref: https://5xlhc2qz20k3jc6dy3g31xb4-wpengine.netdna-ssl.com/wp-content/uploads/2017/11/2018-ConC-Breakout-Sessions.pdf


Also, ASCO has a list of recommended questions to ask your doctor as you are transitioning from trestment to follow-up. Click on the Reference link at the very bottom to know more.
.
Questions to Ask the Doctor
To learn more about follow-up care for colorectal cancer, consider asking the following questions of your health care team:

What is my risk of recurrence?
What follow-up tests will I need, and how often will I need them?
Who will be coordinating my follow-up care?
If I move or need to switch doctors, how do I make sure to continue my recommended follow-up care schedule?
How often will I need CEA testing? Where will it be done?
How often do I need a CT scan? Where will it be done?
How often do I need a colonoscopy? Who will do it and where will it be done?
How often do I need a rectosigmoidoscopy (rectal cancer only)?
What signs and symptoms should I watch for?
What type of follow-up care do I need beyond five years after treatment?
Where can I find more information about follow-up care?

Ref: https://www.journeyforward.org/follow-care-colorectal-cancer
Last edited by O Stoma Mia on Tue Feb 06, 2018 1:20 pm, edited 1 time in total.

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Mon Feb 05, 2018 1:56 pm

I think it will be both my oncologist and my GP, but I will talk to my onc about it, probably when I see him for final blood work prior to surgery. I know I will be going back to him for ongoing surveillance, but I’ll also be seeing my GP for overall health. Thanks for the tip!
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

Lee
Posts: 5724
Joined: Sun Apr 16, 2006 4:09 pm

Re: Reversal surgery

Postby Lee » Mon Feb 05, 2018 2:12 pm

heiders33 wrote: . . . Meanwhile, the Hollister products which I received in the hospital have passed with flying colors. They are more awkward and bulky, but they don't leak. The convex skin barrier works best for me. Just goes to show that each person needs to figure out what's best for them. I've had some horrific leaks with Coloplast.


I use Hollister products too and like them a lot. I started with Coloplast, butt developed an allergic reaction to it after a couple of years. I've been using Hollister for over 10 yrs now.

Good luck with your upcoming reversal.

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!

User avatar
susie0915
Posts: 865
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal surgery

Postby susie0915 » Mon Feb 05, 2018 2:55 pm

I met with a survivorship counselor that goes over your entire case. She also laid out my plan of treatment for the next 5 years and what I can expect in terms of testing and monitoring. It was pretty informative. You may be referred to something like that, I know more cancer centers are incorporating that into their entire treatment plan.
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

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Wed Feb 07, 2018 10:57 am

I’m sitting in the chair for the last time (hopefully) and getting a 50% reduction in Oxaliplatin dosage because of neuropathy. Still moving forward with full Xeloda dosage. Can’t believe I’ve made it this far! Kudos to all of you who have to do more cycles - I admire you very much.
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: 865
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal surgery

Postby susie0915 » Wed Feb 07, 2018 11:28 am

Oh so happy you're done. We all know you could make it through. It can be tough at times throughout the treatments though. Good luck on your last treatment and I hope you do well this round.
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

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal surgery

Postby heiders33 » Wed Feb 07, 2018 12:04 pm

Thank you Susie! My 36th birthday is on Saturday and this is the best birthday present! I’m having a big party on Sunday night to celebrate. Invited all the people who have been supporting me all along. Thinking of having blue cupcakes and a cancer dartboard.
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


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



Who is online

Users browsing this forum: Google [Bot], Yahoo [Bot] and 58 guests