Reversal

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Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Reversal

Postby Atoq » Sun Jun 03, 2018 11:57 pm

I am starting a new topic because I fell I am not that «new» anymore. Today is time for ileostomy reversal. I am a bit worried about life after, because now my life quality is excellent :D But it is worth to give it a try!

All the best

Claudia
45 year old, mother of 2
Dx rectal cancer October 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

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

Re: Reversal

Postby O Stoma Mia » Mon Jun 04, 2018 12:42 am

Good luck on your reversal today! We'll be thinking of you.

Here are some tips on ileostomy reversal from a previous post:

O Stoma Mia wrote:It looks like you have covered most of the important things, but I'll mention a few things that I have said before in other places:

heiders33
Posts: 290
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal

Postby heiders33 » Mon Jun 04, 2018 6:05 am

Good luck with the reversal! Be sure to have some diapers and calmoseptine ointment on hand just in case.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump
October 2018: Clear CT and colonoscopy

User avatar
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Reversal

Postby Atoq » Mon Jun 04, 2018 6:55 am

Thanks a lot! I am already back to my room and they said everything went as planned. Strange to wake up without the bag.

Best

Claudia
45 year old, mother of 2
Dx rectal cancer October 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

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susie0915
Posts: 847
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal

Postby susie0915 » Mon Jun 04, 2018 7:53 am

Just give it time. Everyone responds differently, but there are many things that can be done to control bowel movements. Many do well right out of the gate, others use fiber supplements, immodium, or lomotil to slow things down. Diet can play a role as well. I tried different things for about 15 months. I never had issues with incontinence but with frequent small bowel movements. When most of your rectum is gone there is nothing to hold stool. I ended up going to a bowel control clinic, did some tests, met with a dietician, and also did pelvic floor physical therapy. All very helpful. I now do daily tap water enemas to empty the lower bowel and give me a full day of freedom without needing to use the restroom. It takes me about 30 minutes, allowed me to eliminate meds, I can basically eat what I want without fear, and have been able to gain some of the weight I lost during treatment. There are many options available, but like I said many do pretty well with just diet adjustments and daily fiber. It can take some time to know where you will be with regard to your bowel function. Good luck with your recovery. I'm glad all went well.
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

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

Re: Reversal

Postby O Stoma Mia » Mon Jun 04, 2018 10:10 am

As others have said, it will take time to see how things settle down.

In your case, I think the main underlying variable is the effect that your January LAR surgery might have had on the muscles, nerves, and blood vessels in the pelvic region, as well as the effect that the radiation may have had on the nearby tissues. You had a tumor removed 5cm from the anal verge, and you also had a major hysterectomy at the same time. In addition, the tissues in the lower pelvic region have probably become degraded due to the radiation exposure. It is not clear how much of your rectum now remains after the surgery, and how many of the essential nearby muscles, blood vessels and nerve connections in the pelvic floor are still present and still functional after the surgery. Only time will tell as you recover from the reversal and as you start trying to use these muscles to control your bowel movements.

At first, it may seem that you have no control at all, but the control will eventually get better over time. But, in my experience, the doctors cannot predict very well how fast the recovery will occur. You will probably be the best judge of how fast things are going to progress.

Are you in much pain now? One of the possible problems during reversal recovery is over-use of strong pain medications in the immediate post-operative period. Over-use of these strong medications can cause constipation and other difficulties and make it more difficult to develop a natural bowel movement sequence.

User avatar
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Reversal

Postby Atoq » Mon Jun 04, 2018 10:53 am

susie0915 wrote:Just give it time. Everyone responds differently, but there are many things that can be done to control bowel movements. Many do well right out of the gate, others use fiber supplements, immodium, or lomotil to slow things down. Diet can play a role as well. I tried different things for about 15 months.


Thanks a lot Susie, it is very nice to know that there are many options to try and read about people like you who regain control with daily enemas.

Claudia
45 year old, mother of 2
Dx rectal cancer October 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

User avatar
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Reversal

Postby Atoq » Mon Jun 04, 2018 11:02 am

O Stoma Mia wrote:As others have said, it will take time to see how things settle down.

In your case, I think the main underlying variable is the effect that your January LAR surgery might have had on the muscles, nerves, and blood vessels in the pelvic region, as well as the effect that the radiation may have had on the nearby tissues. You had a tumor removed 5cm from the anal verge, and you also had a major hysterectomy at the same time. In addition, the tissues in the lower pelvic region have probably become degraded due to the radiation exposure. It is not clear how much of your rectum now remains after the surgery, and how many of the essential nearby muscles, blood vessels and nerve connections in the pelvic floor are still present and still functional after the surgery. Only time will tell as you recover from the reversal and as you start trying to use these muscles to control your bowel movements.

At first, it may seem that you have no control at all, but the control will eventually get better over time. But, in my experience, the doctors cannot predict very well how fast the recovery will occur. You will probably be the best judge of how fast things are going to progress.

Are you in much pain now? One of the possible problems during reversal recovery is over-use of strong pain medications in the immediate post-operative period. Over-use of these strong medications can cause constipation and other difficulties and make it more difficult to develop a natural bowel movement sequence.


Yes, there are lots of variables in there, surgery did damage the nerves to the urine bladder, but they slowly repaired themselves. For the time being I have not being in pain, but maybe I got a strong medication before surgery and the effect will fade out soon. Right now I am sitting on the bed and feel only a bit of pain around the stomy.

Claudia
45 year old, mother of 2
Dx rectal cancer October 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

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

Re: Reversal

Postby Aqx99 » Mon Jun 04, 2018 11:40 am

Good luck! There is so much for your body to learn after reversal, so take it slow. My pelvic physical therapist helped me with dietary advice, because I was struggling. Reintroduce new foods slowly, one at a time. Your body will adjust. I keep a journal of food intake and bowel movements, so I know how foods affect my system.
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
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Reversal

Postby Atoq » Mon Jun 04, 2018 11:47 am

Thanks and congratulations for the wondeful PET result! :D

Claudia
45 year old, mother of 2
Dx rectal cancer October 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

NHMike
Posts: 1732
Joined: Fri Jul 21, 2017 3:43 am

Re: Reversal

Postby NHMike » Mon Jun 04, 2018 2:41 pm

That was fast. I was looking at the timestamps and you must be way ahead of us.

I hope things go really well. I'm impressed that you posted the same day after your surgery.
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

User avatar
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Reversal

Postby Atoq » Mon Jun 04, 2018 4:05 pm

NHMike wrote:That was fast. I was looking at the timestamps and you must be way ahead of us.

I hope things go really well. I'm impressed that you posted the same day after your surgery.


Thanks Mike! This surgery was a piece of cake, I am already walking in the corridors and feel not limited by the surgery wound. I guess the difficult part has still to start :)
Yes here it is past 23 now.

Claudia
45 year old, mother of 2
Dx rectal cancer October 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

SteveNZ
Posts: 142
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Reversal

Postby SteveNZ » Mon Jun 04, 2018 5:29 pm

Atoq wrote:Thanks a lot! I am already back to my room and they said everything went as planned. Strange to wake up without the bag.

Best

Claudia

Thinking of you Claudia.
I hope all goes well ..... It is almost like another chapter in your story to beat cancer. And even for me (I know I have it pretty good compared to so many) I discovered it is a 'thick, thick' book of each of our personal story's. May there be some chapters full of joy and laughter.
I will be praying for you. :D
Steve
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

heiders33
Posts: 290
Joined: Sat Nov 04, 2017 11:08 am

Re: Reversal

Postby heiders33 » Mon Jun 04, 2018 7:04 pm

Yup, the hard part of this surgery’s recovery comes after you leave the hospital. :o Keep us posted!
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump
October 2018: Clear CT and colonoscopy

User avatar
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Reversal

Postby Atoq » Wed Jun 06, 2018 1:37 am

It looks like they are ready to send me home, things are going through the system, but I am still very careful with what I eat. The pain from the stomy site is very little.

Claudia
45 year old, mother of 2
Dx rectal cancer October 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


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