Takedown Info

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Surroundedbylove
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Takedown Info

Postby Surroundedbylove » Fri Oct 23, 2009 5:37 pm

Hi all,

Here is some information from my surgeon in preparation for my takedown surgery. He'll have me take Entereg right before the surgery and again that night and then twice a day until I pass stool. Entereg is a drug that is supposed to help the bowels get going after surgery.

Once my bowels get going he expects that I will have diarrhea but he said no Imodium or anything else to control it for at least a week - just focus on staying hydrated and he wants to see how the body adapts naturally by the one week point before adjusting and adding meds or the MD Anderson bowel management program. He said during that week that I'm to eat what sounds good - no restrictions at all. I questioned fiber and he said go ahead and eat the things that I couldn't eat with the ileostomy if they sound good. :-) He said to expect to want to only eat small quantities at a time and to have some nausea that comes and goes.

I'll provide updates as I get them!
Last edited by Surroundedbylove on Wed Oct 28, 2009 12:23 pm, edited 1 time in total.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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BrownBagger
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Re: Takedown Info

Postby BrownBagger » Fri Oct 23, 2009 5:54 pm

The doctor told me to have my wife bring me something that I really like--instead of the hospital fare. Good advice. Just don't eat hot, spicy food or food with a sharp flavor, as you will live to regret it.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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Kathryn in MN
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Re: Takedown Info

Postby Kathryn in MN » Fri Oct 23, 2009 6:12 pm

And make sure you chew everything up very well - just in case. I know some people have had issues with a little narrowing from swelling or other issues after surgery, so you want things to be small as possible going through.

Good luck to you!
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

Surroundedbylove
Posts: 3126
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Takedown Info

Postby Surroundedbylove » Fri Oct 23, 2009 7:29 pm

Thanks all - I really appreciate the support and tips!
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Takedown Info

Postby CRguy » Fri Oct 23, 2009 7:55 pm

Kathryn in MN wrote:And make sure you chew everything up very well
Good luck to you!


AND when you think you have chewed it very well.....WELL ! chew it again !!!!

Eat small meals, avoid anything with visible "fibers" (celery) or "hulls" peanuts or popcorn or corn.
Keep active, as permitted by your status and health. Keep hydrated. Go for low residue, low bulk, foods for a while. Establish what you can handle and slowly add to this one thing at a time.

CALL or go to emergency if you feel pain, severe bloating, vomitting etc. which does not subside with 1 "wave."
If they say "False alarm...great !"
leave it too long and you will not enjoy things.

Post anything HERE. anytime !

take care and be well
Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Surroundedbylove
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Location: Seattle

Re: Takedown Info

Postby Surroundedbylove » Mon Oct 26, 2009 8:08 pm

Surgery done - now just waiting! :-) Thank heaven for wireless connections in hospitals!
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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Terry
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Re: Takedown Info

Postby Terry » Mon Oct 26, 2009 8:15 pm

I'm so glad you got through it, now heal quickly without any problems!

I agree with brownbagger (I think it was him), don't eat anything spicey, your bottom will thank you.

Isn't it wonderful how hospitals have wireless. Now that I have a laptop when I have oxi I'll have something to do. You can come on here, go on facebook and play games if your really bored while your recooperating.

Hang in there and God Bless!
Terry
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

Surroundedbylove
Posts: 3126
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Location: Seattle

Re: Takedown Info

Postby Surroundedbylove » Wed Oct 28, 2009 11:46 am

Thanks so much for all of your support!

Well, Monday was surgery so that makes this either day 3 or day 2 depending on how you count. :-) I woke up this morning to find poop. Yes, a little accident but you know what? I was glad it had started! I never passed gas - I went straight to the poop. :-) My surgeon said that I was right on time based on his experience with patients who take Entereg, walk frequently (seven times yesterday), and don't have other complicating factors. He said another woman had the same surgery last week and she had the same schedule for recovery.

So - here's the wild thing - they are sending me home later today - wow - two days and two nights in the hospital - that's all. I must admit I'll sleep better at home.

My wound is an open wound. I have six staples - three on each side. Interestingly the pain is actually a bit more than when I had my LAR and the creation of the temporary ileo. My LAR was laproscopically assisted - I still have a midline incision but it extends up to about 2 inches below my belly button. The surgeon said that I would actually have more abdominal pain with the reversal surgery recovery because more muscle is cut. He said the protocol with the wound will simply be to shower each day with the gauze bandage on that covers it, then remove the bandage (that now is nice and wet from the shower), replace it with another layer of gauze bandage and tape all around. No packing and no special cleaning of the wound.

Like Eric did, I'll try to do a little mini-blog of my experience so that others can learn from it.

Speaking - of that - I did start eating Activia yogurt two weeks before the surgery - I'm not sure if it helps the small intestine or just the large one but I figured it couldn't hurt. I intend to eat one or two a day for weeks to come.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

NWgirl
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Re: Takedown Info

Postby NWgirl » Wed Oct 28, 2009 12:02 pm

Awesome!!!! Sounds like you are doing great. I had an open wound as well. Only difference was that my surgeon told me to shower with the bandage off - no soap, but just to let water run across it - then put a clean/dry gauze pad over it when I got out. You will be amazed at how fast that wound heals up. Mine was almost completely healed in a month. The wound didn't hurt, but I did have pain. In the hospital if I wasn't moving a lot I was okay, but at home where I was much more active, I did need pain meds - but not for very long. Still, nice to have them when you need them. Lets hope your future recovery is as quick as Eric's was as well!
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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BrownBagger
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Re: Takedown Info

Postby BrownBagger » Wed Oct 28, 2009 12:10 pm

Great news! Your experience sounds a lot like mine.

Keep eating the Activa--stay away from spicy meatballs--use your pain meds to calm your bowels.

Good luck, SBL!
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

Cured
Posts: 581
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Re: Takedown Info

Postby Cured » Wed Oct 28, 2009 10:18 pm

Yes!:) You're doing great. Keep moving forward! Remember you can use all of the Milk of Magnesia that you need (I did not need after day 1) and all of the Imodium you need. My surgeon says you cannot OD on either.

I had my Illeostomy for 6 months and the colon atrophied. It took a while to enlarge it. Still not at old capacity yet, but able to sleep through most nights.

Keep up the fiber.
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:32
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

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Kathryn in MN
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Re: Takedown Info

Postby Kathryn in MN » Wed Oct 28, 2009 10:44 pm

Great news - so glad to hear you are doing so well. Please keep us updated as you go.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

Surroundedbylove
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Re: Takedown Info

Postby Surroundedbylove » Thu Oct 29, 2009 11:07 am

Good morning all - here is my Day 4 Update

Yesterday I wasn't very hungry and I was a little nauseated most of the day. The doctor said that was normal as long as my bowels were still working (gurgling counted) and this first week to not be too worried if I didn't have much of an appetite - just focus on staying hydrated. I actually went the entire day without a bowel movement until 9 pm (likely because I'd eaten only small quantities of food throughout the day). Starting at 9 pm I had about 2 hours where I needed to keep going back to the bathroom every 10-15 minutes. It wasn't diarrhea - it was more the need to fully evacuate and the inability to do just that - feeling like you're done and then 10 minutes later you have the urge again. I believe it is the clustering. From 9 - 11 I had pretty bad abdominal cramps, the rectal cramps, and nausea but after 11 pm once I evacuated as much as was going to come out, then the nausea completely subsided as did the cramps. I feel like gas helps to push along the contents but I don't have much of my own pushing ability yet. The pain killers may be keeping diarrhea at bay - we'll see as time goes by and I taper off the narcotic pain killers to the prescription strength ibuprofen.

Great news - I slept through the night for the first time post LAR/ileostomy surgery! No bag to drain at 3:00 am - that was really nice for the sleep deprived me. :-)
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
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Re: Takedown Info

Postby BrownBagger » Thu Oct 29, 2009 11:24 am

You'll dig sleeping on your stomach before long.

I never got diarrhea to speak of, but I know exactly what you mean about multiple, incomplete evacuations. You'll have to get used to that--I still have that to some extent, though it's beginning to smooth out, so to speak. Don't be surprised if at some point you go 3 or 4 days without doing anything. Then, watch out! Four days worth of crap takes awhile to squeeze out of that J-pouch--especially when you don't have much in the way of push muscles. And I hear you on the value of the gas. Cramps, too--for getting the job done.

I had good days and bad days for the first couple of weeks, but then the good ones start to outpace the bad ones pretty handily. I'd say that now, I'm down to a handful of bad days a month--and they're not all that bad--just uncomfortable or inconvenient.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

Surroundedbylove
Posts: 3126
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Takedown Info

Postby Surroundedbylove » Fri Oct 30, 2009 11:17 am

Good morning Friday - Day 5 post takedown.......

Well, yesterday was about the same as the day before. I still am not super hungry and am eating small quantities throughout the day rather than a bigger meal. I get a little nauseated still and have some abdominal cramping. I'm definitely passing gas but again I didn't have a bm until 9:00 pm and then it was a series of trips to the bathroom to evacuate which ended about 11:00 pm. It did seem to be a little less gassy and slightly more formed. Oh the things we discuss on here! :-) I still don't feel like I have any "push" muscles and the gas seems to help expel the stool. Although the two hours to fully evacuate is frustrating I am hopeful that not having to go constantly throughout the day may be a good sign. We'll see - it simply may be less food intake. Although the nausea subsides once I'm fully evacuated, I'm hopeful that the nausea will go away for good soon. I'd also sure like to get some push muscles back and cut down on this "clustering." I did do some reading of scientific journals and apparently the clustering is one of the biggest adaptation issues for both a colonic j-pouch and a straight colo-anal anastomosis.

I continue to eat an Activia a day and today will try a little bit of roughage and gas producing foods - hoping that perhaps some more roughage and more gas will help things move along! The doctor did say I had a totally unrestricted diet so cole slaw or brussel sprouts here I come! (I love both and needed to avoid them with the ileostomy.)
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019


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