Reversal Thread

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Basil
Posts: 207
Joined: Thu Mar 16, 2017 12:33 pm

Re: Reversal Thread

Postby Basil » Tue Sep 26, 2017 2:48 pm

Being discharged now, 24 hours after surgery. My total hospital stay for LAR and reversal was 36 hours. I was told to expect crazy going for a couple of weeks. Luckily, I'll have the house mostly to myself. Unlike some others, I'm hungry as hell. A nice steak dinner sounds wonderful - and my doc said go for it - but I'm going to try and stay BRAT. Don't think my willpower is going to last too long on that.

Another interesting thing - I asked about immodium or metemucil or whatever you take and she said to try and hold off so my body has to deal with it and hopefully figure out a solution quicker. Before I try and head back to work, I'm meeting with the pros here to evaluate where I am and get whatever they suggest to help me normalize me best they can with medicine.

Luckily, for the next two weeks my wife will be at work until 2 or 3 and the kids will be at school. So I'll have a nice staycation with Netflix and the potty.
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

88kaw88
Posts: 6
Joined: Sun Sep 24, 2017 7:41 am

Re: Reversal Thread

Postby 88kaw88 » Tue Sep 26, 2017 4:00 pm

Congrats! Who did your surgery at MD?

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susie0915
Posts: 440
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Thread

Postby susie0915 » Tue Sep 26, 2017 5:00 pm

You have to be careful with the immodium or lomotil as too much can put you into constipation, which I found out the hard way. I never had diarrhea, just frequent small stools. Check out the MD Anderson bowel control program there are some good tips on there. I would wait awhile before you implement the program, you may just do fine after a few weeks when your insides adjust. The program is set up to train your bowels to evacuate at the same time each day. The goal is to make your bms larger so you can avoid the clustering and frequency. So glad you're doing well. Take care and try to be patient. It does take time. Your anatomy is all changed now.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. 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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

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CRguy
Posts: 9286
Joined: Sun Feb 10, 2008 6:00 pm

Re: Reversal Thread

Postby CRguy » Tue Sep 26, 2017 5:09 pm

Heal gently my friend
listen to your body and don't try to " tough it out "

if you have ANY ???, concerns or issues ... get those Docs earning their pay !!

Mucho Cheers and Harmony to you
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Basil
Posts: 207
Joined: Thu Mar 16, 2017 12:33 pm

Re: Reversal Thread

Postby Basil » Tue Sep 26, 2017 5:40 pm

88kaw88 wrote:Congrats! Who did your surgery at MD?


George Chang. He did a great job both times and he's the one who drove the ship on my treatment protocol.
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

Basil
Posts: 207
Joined: Thu Mar 16, 2017 12:33 pm

Re: Reversal Thread

Postby Basil » Tue Sep 26, 2017 5:43 pm

susie0915 wrote:You have to be careful with the immodium or lomotil as too much can put you into constipation, which I found out the hard way. I never had diarrhea, just frequent small stools. Check out the MD Anderson bowel control program there are some good tips on there. I would wait awhile before you implement the program, you may just do fine after a few weeks when your insides adjust. The program is set up to train your bowels to evacuate at the same time each day. The goal is to make your bms larger so you can avoid the clustering and frequency. So glad you're doing well. Take care and try to be patient. It does take time. Your anatomy is all changed now.


I'm not taking any Imodium for now and theres not much coming out. Went about five times today, all liquid. On pain meds and have eaten very little so I'm not yet into the initial storm.
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

88kaw88
Posts: 6
Joined: Sun Sep 24, 2017 7:41 am

Re: Reversal Thread

Postby 88kaw88 » Tue Sep 26, 2017 7:37 pm

Basil wrote:
88kaw88 wrote:Congrats! Who did your surgery at MD?


George Chang. He did a great job both times and he's the one who drove the ship on my treatment protocol.


Good deal...Hope everything continues to go well.

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Foley catheter removal

Postby JJH » Wed Sep 27, 2017 2:29 am

Basil wrote:... I had a catheter and the surgeon wanted to take it out at midnight but the wife did me a solid and got the dr. to have it removed while I was still out. Problem is they apparently removed it like they were trying to pull start a lawn mower because it feels like razor blades....

It looks to me like the nurse didn't follow SOP for removing a Foley catheter. They are supposed to wait until the ballon is fully deflated and then they are supposed to gently pull the catheter out:

https://www.saintlukeshealthsystem.org/health-library/foley-catheter-removal
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: Reversal Thread

Postby JJH » Wed Sep 27, 2017 2:40 am

susie0915 wrote:You have to be careful with the immodium or lomotil as too much can put you into constipation, which I found out the hard way....

What susie0915 said is very important. The last thing you want right now is a big hard stool caused by imodium overdose. This can cause a very painful anal fissure, or with straining at the stool it can cause an incisional hernia, etc., etc. It might even cause a leak in your anastomosis junction. You have to be very careful about this.
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Bowel management resources

Postby JJH » Wed Sep 27, 2017 3:05 am

susie0915 wrote:...Check out the MD Anderson bowel control program there are some good tips on there.

Here is a link to the MD Anderson Bowel Management Program resources. Links to the various documents avalable there are found on the right hand side of the web page:
https://www.mdanderson.org/patients-family/diagnosis-treatment/emotional-physical-effects/bowel-management.html

There are also some very good resources available from the Michigan Bowel Control Program:
https://medicine.umich.edu/dept/michigan-bowel-control-program

Here is one page with tips on avoiding constipation:
https://medicine.umich.edu/dept/mbcp/patient-resources/constipation

In addition, there are some good booklets/factsheets at beatingbowelcancer.org, including a document entitled "Regaining Bowel Control V1.0"
https://www.beatingbowelcancer.org/how-we-can-help/booklets-factsheets/
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

Basil
Posts: 207
Joined: Thu Mar 16, 2017 12:33 pm

Re: Reversal Thread

Postby Basil » Wed Sep 27, 2017 4:20 am

Thanks for the links. I'll check them out.

I was a bit worried last night because everything had gone silent for hours. Turns out not be be a problem. Woke up at 3:30 a.m. with normal pain around the surgical site. Got up to take some meds and have been clustering ever since. Still all liquid but I was told to expect that for a couple of days. No pain or burning.

On a positive note, it quit hurting when I pee. I suppose the penis is a pretty resilient organ.
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

User avatar
susie0915
Posts: 440
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Thread

Postby susie0915 » Wed Sep 27, 2017 8:17 am

Sounds like things are going pretty well. Did they order a home care nurse I had one both when I had resection and reversal. Of course, with my reversal i also had surgery for a bowel blockage so maybe that is why. I just thought they were helpful and could answer a lot of questions.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. 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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

tammylayne
Posts: 2167
Joined: Fri Jul 16, 2010 9:24 am

Re: Reversal Thread

Postby tammylayne » Wed Sep 27, 2017 10:06 am

Look at your recovery victories in weeks, not days. I felt 2, 4 and 8 were the big weeks. You will have days that take you backwards....thats ok. Keep your eye on the big picture...good luck
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

Basil
Posts: 207
Joined: Thu Mar 16, 2017 12:33 pm

Re: Reversal Thread

Postby Basil » Thu Sep 28, 2017 3:46 pm

I got out of the hospital Tuesday afternoon and had diarrhea and clustering through Wednesday night. Today, nothing. Of course, I haven't been eating much and I'm on narcotic pain meds so I assume I'm just backed up after the initial output.

Does this sound normal? I can feel/hear things moving along, just no BM today. If I had a blockage or something I'd think there would be discomfort and cramping pretty quickly. I don't have any of that, just no output. Is there anything I should be doing or thinking about, or just wait?
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

C2WAVE2
Posts: 25
Joined: Sun Apr 23, 2017 3:22 pm

Re: Reversal Thread

Postby C2WAVE2 » Thu Sep 28, 2017 4:55 pm

I went from two days of diharia post reversal to Constipation fairly quickly..
Not sure what normal is.. But I dont believe it was/is blockage problems.. Gradually
the constipation has been getting better.
If I had to guess what happening to me, since not as much rectum left, theres not enough
build up pressure to let things fly. But eventually it does slowly, and at that point the whole
colon does want to empty, just takes long time Good luck there..
4/24/17. 55yr Male, Dx RC near Retcum/Sigmoid junction
O4/28/17 Ct
O5/04/17 MRI
Prelim. T1 N0 M 0 CEA 3.2
O5/23/17 Surgery, LAR 4.5" incision to remove tumor Temp Ileostomy
6/1/17 Pathology report 6.5 x 4.3 x 1.7 cm tumor, Adenocarcinoma,
Moderately to Poorly Differentiated , 0/27 Lymph, T2N0M0
08/02/17 Ileostomy Reversal


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