Reversal recovery time

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Aqx99
Posts: 389
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Location: Pfafftown, NC

Reversal recovery time

Postby Aqx99 » Tue Dec 26, 2017 12:12 pm

My mom was asking me how much time she should plan on spending at my place after my reversal. I know it should be a quicker recovery than the LAR, but I am unsure of what to tell her. I am currently sitting at DFW waiting on my connecting flight down to my parents' place. We plan to discuss this when I get there. It would be nice to have some sort of estimate to give her.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
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 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal
3/21/18 CT showed enlarged thymus
4/6/18 PET confirmed NED

Lee
Posts: 5527
Joined: Sun Apr 16, 2006 4:09 pm

Re: Reversal recovery time

Postby Lee » Tue Dec 26, 2017 4:44 pm

I never had the reversal, as I went in to surgery knowing I would come out with a permanent bag. The surgery itself is pretty easy to recover from, butt the new plumbing system may be a challenge for a while. Hopefully others who have been down this road will have answer for you.

Good luck with your upcoming surgery.

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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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal recovery time

Postby susie0915 » Tue Dec 26, 2017 6:08 pm

I hope someone answers you soon. I had my reversal 4 weeks after my resection during surgery to remove scar tissue causing a bowel blockage. The recovery from that incision was tougher as it was vertical from above my belly button down to my pubic bone. So I never really noticed the area where my ileostomy was. I think Lee is correct as the return of bowel movements may take a little longer to figure out. Everyone is different, but the healing from reversing the ileo is pretty easy.
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

tarheelmom
Posts: 167
Joined: Mon Mar 07, 2016 5:55 pm

Re: Reversal recovery time

Postby tarheelmom » Tue Dec 26, 2017 9:55 pm

Surgical recovery was quick. 2 days in the hospital. Back to work within 2 weeks. Learning to live with my new anatomy is an ongoing but improving process. The first 6 months were tough. Good luck to your mom.
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

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O Stoma Mia
Posts: 1271
Joined: Sat Jun 22, 2013 6:29 am

Reversal of Ileostomy

Postby O Stoma Mia » Wed Dec 27, 2017 1:16 am

Last edited by O Stoma Mia on Sat Feb 03, 2018 2:48 pm, edited 1 time in total.

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

Re: Reversal recovery time

Postby rockhound » Wed Dec 27, 2017 11:41 am

tarheelmom wrote:Surgical recovery was quick. 2 days in the hospital. Back to work within 2 weeks. Learning to live with my new anatomy is an ongoing but improving process. The first 6 months were tough. Good luck to your mom.


I was in hospital for four nights; took that long for things to get moving again. First two weeks were horrible with 20+ times/day of pooping, then got tested for C.Diff (negative), then promptly started taking metamucil per surgeon orders. That made a huge difference- 5 weeks out I was flying 3.5 hrs to a week-long professional conference and with immodium, all was fairly manageable- surgeon and onc. approved of this and loved that I was going. My reversal was on Sept 20- now things have been incrementally better and more predictable. The more I eat, the more I go to the bathroom during the day. Largest amount seems to be regulating to morning, as things were before I had cancer. If I eat some foods, I go more, etc.

As far as pain/physical stuff goes, I was on lifting restrictions for 6 weeks but no no issues. 4 weeks I felt pretty good overall; the first two were really the worst. Overall though way way better and easier physical recovery relative to the original resection. For example, with the reversal, I was up the next day in the hospital and doing lap after lap; with the resection, I could barely do 2 laps and that surgery really wiped me out initially. My ileostomy site is still sore if I move certain ways, but I think that is because of the scar and it is still healing - I'm exercising regularly and no issues with that really. I was back working in two weeks also, but that was mainly because of the bowel issues and not physical pain- I could have been back sooner if no bowel issues. Hope this helps a bit!
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

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O Stoma Mia
Posts: 1271
Joined: Sat Jun 22, 2013 6:29 am

Preparation for reversal / takedown recovery

Postby O Stoma Mia » Thu Dec 28, 2017 12:53 am

Your mom could be helpful in two main ways just after your reversal surgery: (1) shopping errands, and (2) laundry.

Just after reversal you won't feel like going out on long shopping trips. Your mom could do your shopping for you and pick up the essentials (more ultra-soft toilet paper, more Imodium, more Metamucil, adult diaper rash cream, or whatever). She could also do the food shopping for you, provided she buys only foods that are on the approved list for reversal patients.

Your mom could also do your laundry for you (wash, dry, fold) so that you always have clean sheets, clean towels, clean clothes, etc.

You now have about 3 weeks left to prepare for your reversal. You could spend some of this time reading the hospital leaflets on reversal and also reading some of the reversal / takedown journals that have been posted here on the Forum:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53157&p=420069#p420069

You could also spend some of this time doing preliminary shopping for the items that you are sure you will need just after reversal.
Last edited by O Stoma Mia on Wed Jan 17, 2018 10:16 pm, edited 1 time in total.

Basil
Posts: 239
Joined: Thu Mar 16, 2017 12:33 pm

Re: Reversal recovery time

Postby Basil » Thu Dec 28, 2017 7:53 pm

Recovery can be shitty or not a big deal. I fell into the latter category. My plumbing is different but highly manageable. I face no issues on a day-to-day basis. Hope the same for your mom.
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

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O Stoma Mia
Posts: 1271
Joined: Sat Jun 22, 2013 6:29 am

Re: Reversal recovery time

Postby O Stoma Mia » Wed Jan 17, 2018 10:20 pm

It's less than a week until your reversal. Do you have everything under control now? Any last-minute questions?

Aqx99
Posts: 389
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Location: Pfafftown, NC

Re: Reversal recovery time

Postby Aqx99 » Thu Jan 18, 2018 1:03 am

O Stoma Mia wrote:It's less than a week until your reversal. Do you have everything under control now? Any last-minute questions?


My mom is coming in to stay with me for 11 days. My surgeon told me he wants me out of work for a month, so that time has been requested. I wish this snow storm hadn't hit this week. My cancer center was closed today and will be again tomorrow. I was supposed to go see the oncology counselor today. I think it would have helped for us to talk over everything again. She's been helping me through some of my worries about reversal. It also means that my nurse navigator is unavailable until Monday, since she doesn't work on Fridays. It does help knowing that I have the pelvic physical therapist available to help me after surgery. She sounds like she knows what she is doing. I think I am as ready as I can be!
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
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 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal
3/21/18 CT showed enlarged thymus
4/6/18 PET confirmed NED

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O Stoma Mia
Posts: 1271
Joined: Sat Jun 22, 2013 6:29 am

Re: Reversal recovery time

Postby O Stoma Mia » Thu Jan 18, 2018 2:35 am

Aqx99 wrote:My mom is coming in to stay with me for 11 days.

I see that your weather there is dreadful right now. I hope it clears up soon and that your mother doesn't have any travel problems on her way to your place.

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ocstacy
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Facebook Username: stacy

Re: Reversal recovery time

Postby ocstacy » Thu Jan 18, 2018 4:14 am

My mom is coming in to stay with me for 11 days. My surgeon told me he wants me out of work for a month, so that time has been requested. I wish this snow storm hadn't hit this week.



Good to know as I will be your mother with my mother. She is nervous about the reversal too, she hates surgery as the last one was her only surgery. Last year was all such a blur. I spent every night with my mom at the hospital for the last surgery. I cried, I will admit to see her post surgery. She said her eyes hurt and its cause her poor eyelashes were pulled out from the tape from the surgery. The hospital was far from my home and I couldn't leave my mom all alone of course. When my dad, brother, and aunt left I was all alone with her and I just got emotional cause I was scared.No nurses were around, it was a ghost town. I was her nurse. I hope that your surgery goes well and that you can share you experience with us. You are doing great and you are strong! I found my mom the best surgeon who was able to get all of the cancer out. My mom is doing the chemo clean up now and doing the 2 weeks on, 1 week off Xeloda. Happy New Year!
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 back @ hospital due 2 abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Reversal 07/2018?
Me: Colonoscopy age 38. 08/17 Benign polp. internal hemmy's post partum

Aqx99
Posts: 389
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Reversal recovery time

Postby Aqx99 » Thu Jan 18, 2018 12:28 pm

O Stoma Mia wrote:
Aqx99 wrote:My mom is coming in to stay with me for 11 days.

I see that your weather there is dreadful right now. I hope it clears up soon and that your mother doesn't have any travel problems on her way to your place.


The crazy thing about North Carolina is that we can get a foot of snow on Wednesday, and be at 60 degrees by Sunday. Last I looked, that was the forecast. My mom is flying in on Monday, I don't anticipate any issues.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
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 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal
3/21/18 CT showed enlarged thymus
4/6/18 PET confirmed NED

Aqx99
Posts: 389
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Reversal recovery time

Postby Aqx99 » Thu Jan 18, 2018 12:36 pm

ocstacy wrote:
My mom is coming in to stay with me for 11 days. My surgeon told me he wants me out of work for a month, so that time has been requested. I wish this snow storm hadn't hit this week.



Good to know as I will be your mother with my mother. She is nervous about the reversal too, she hates surgery as the last one was her only surgery. Last year was all such a blur. I spent every night with my mom at the hospital for the last surgery. I cried, I will admit to see her post surgery. She said her eyes hurt and its cause her poor eyelashes were pulled out from the tape from the surgery. The hospital was far from my home and I couldn't leave my mom all alone of course. When my dad, brother, and aunt left I was all alone with her and I just got emotional cause I was scared.No nurses were around, it was a ghost town. I was her nurse. I hope that your surgery goes well and that you can share you experience with us. You are doing great and you are strong! I found my mom the best surgeon who was able to get all of the cancer out. My mom is doing the chemo clean up now and doing the 2 weeks on, 1 week off Xeloda. Happy New Year!


If she is like me, she will be looking forward to the reversal surgery. I am grateful for my ileostomy. It helped to save my life. But now it is time for it to go. I am trying my best to steel my nerves for what comes after the surgery. I know I will probably break down the first time I have an accident. I'm glad I have my mom coming to help me. She changed my diapers as a baby, so this will be nothing new to her.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
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 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal
3/21/18 CT showed enlarged thymus
4/6/18 PET confirmed NED

MissMolly
Posts: 487
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Reversal recovery time

Postby MissMolly » Thu Jan 18, 2018 1:33 pm

Anne:
A mother’s love is like no other.

I am glad that you will have your mother staying with you and standing with you, by your side. My mother has been my primary support though my surgeries, and I can say that she was the person that I most needed and wanted when my embers have been low and barely glowing. My mother intuitively knew when I needed a warm buckwheat pack to ease pain. She would often make me baked custard with fresh vanilla, one of my favorite “comfort foods” from when I was a child. We can all benefit from a mother’s love, even as adults.

Best wishes for a successful 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.


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