Ileo Reversal - LAR recovery

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SGNYC
Posts: 35
Joined: Mon Sep 03, 2018 9:20 pm

Ileo Reversal - LAR recovery

Postby SGNYC » Wed Feb 13, 2019 11:38 am

DH has reversal surgery this coming weekend. He had the vast majority (80%) of rectum removed and we know it’s going to be a journey to get to a new normal.

We will get a full plan from colorectal (increasing fiber slowly etc) but I would be interested in any insights or suggestions for how to handle the week(s) immeadiately after surgery. We know Depends is on the shopping list! As is Desitin. How about a bidet or anything else that was helpful? I’ve read the boards and have gotten great info on LT strategies for dealing with any LARs but am a bit more uncertain about the near term recovery.

Also any tips on dealing with the Ileo reversal/open wound recovery would be deeply appreciated as well.

Thank you all.
Wife to DH, 44
DX July 18 - RC at Rectosigmoid
Adenocarcinoma, Mod diff
T3N1M1
Stage IV (but MSK said not a true Stage IV at Dx)
Pos nodes: 1/18
1 Liver Met and 1 Lung Met - liver Met dead tissue at surgery, hence MSK M1 status
Baseline CEA value of 25, now 3.4
LAR (Robotic)/Liver resect(dead tissue), VATS lung - clear margins
Temp Ileo- Reversal Feb 19
Folfox - 5 Rounds Neoadj, 3 rounds Adj, then discontinued Oxali and 4 rounds just 5FU
NED and Reversal Feb 2019 - clear contrast CT, clear contrast MRI

Cured
Posts: 561
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Ileo Reversal - LAR recovery

Postby Cured » Wed Feb 13, 2019 7:12 pm

Dear SG, The reversal is not a bad surgery. My surgeon is very cautious post surgery. Not even water to drink for a few days. Then gradually from water to soft foods.
You get capacity back gradually. Since I had the illeostomy for 6 months, it took about 18 months to get back to normal. I was pretty good by 9 months; but the colon had atrophied from lack of use. Further, when patients are not properly counseled they eat wrong and bad things seem to happen. Take it easy and the recovery should be fine.

Popcorn is one of my favorite foods and I can barely eat it.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3
12 rds Folfiri
Avastin evy 3 wks
Seizure Anti-seiz meds work-no driving for 6 mo
4-20PET: Lung spots=Chemo

Gravelyguy
Posts: 309
Joined: Thu Jul 05, 2018 6:03 pm

Re: Ileo Reversal - LAR recovery

Postby Gravelyguy » Wed Feb 13, 2019 7:22 pm

When his bum gets sore, a shallow bath with a little Dreft will help it feel better. Early on I took one or two a day.


Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

NHMike
Posts: 2436
Joined: Fri Jul 21, 2017 3:43 am

Re: Ileo Reversal - LAR recovery

Postby NHMike » Mon Feb 18, 2019 6:19 pm

I have a long thread with a lot of gory details but it would take some time finding the stuff on the reversal. My reversal was July 30, 2017 and things are still challenging but the first week was very difficult.

The first week is hard because the large intestine has been resting and the job of removing water from waste takes a while to get going so stools are very runny for a while. There may be a considerable lack of control as the sphincter muscles haven't been used in a while. I used the long pads at the hospital to help out and they had barrier wipe which helped as well.

I got Depends and a local store brand but those products are primarily for urinary incontinence. I use female pads (Always 5 Thin or Equate 5 Thin) to deal with fecal incontinence and they work better than wearing a Depends backwards. I also used barrier products for a while. I had spray bottles of Cavilon from the Ileostomy and spraying the area reduced irritation. The liquidy stools are caustic on the skin and going a lot can make the area raw and barrier products helped. I also bought Cavilon cream but didn't use it. I also bought Calmoseptine ointment but didn't use it. I did use a jar of Lantiseptic Original Skin Protectant. I had a few boxes of neoprene gloves for chemo and used those to apply the cream.

Amazon sells three-packs of peristaltsis bottles. These hold about ten ounces of water and are squeeze bottles so that you can shoot water to clean up. These result in far less irritation than using toilet paper.

I also picked up 1,000 packs of Kirkland baby wipes. These can be useful for cleaning up large messes though I just used these before getting the bottles. They are a somewhat expensive solution that generates a lot of waste. I used far fewer of these after getting the bottles.

I used the Ileostomy sample bag to hold an emergency kit of three bottles, a few pads and some wipes. This fits inside a duffel bag with more supplies (Depends, etc.) and I use it as a gym bag as well. It is nice to have multiple emergency bags in different places in case you forget to bring it.

I also carry a bunch of small, plastic food bags (like the kind you get a supermarkets to bring roast chickens home in) and I use these to hold used depends, wipes, waste from pads until I can dispose of them. Most public bathrooms don't have trash receptacles in the toilet stalls.

I keep a mental note of locations which have bathrooms that can be used by the public in case I need one while I'm on the road.

There are a number of OTC things that can be taken to speed things up or slow things down or bulk things up. Imodium slows things down but probably won't work until after the large intestine wakes up. Things like Slippery Elm can speed things up. Miralax can speed things up.

That's all I have for now off the top of my head. It's a lot to deal with and it's good that you're planning ahead (I didn't).
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; 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, 2/12 1.2
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
2/19: Clean CT

justin case
Posts: 4266
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Ileo Reversal - LAR recovery

Postby justin case » Fri Feb 22, 2019 5:48 pm

I'll try to find the long thread !If I do I'll post it ! Found it reversal log and experiences, I posted it !
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

scohow66
Posts: 33
Joined: Fri Apr 07, 2017 9:54 am

Re: Ileo Reversal - LAR recovery

Postby scohow66 » Thu Mar 21, 2019 3:25 pm

Hope you are recovering well. Open wound healing takes time and for most part is more icky than painful. I have a visiting nurse come a few times a week, but my wife did most dressing/packing changes daily. Took a while but all healed up nicely. Overall recovery was ok, but I had an issue after surgery where my bowels didn't wake up. Took about week in hospital, but again things got back on track. I do have LARS given most rectum removed. Stared enemas last August and its made a huge difference. More freedom and most days are good...still have some wonky times, but overall I get a good 24 hours relief from symptoms. Its really a day to day thing and try to keep it all in perspective.

Take care.
52 Year old male
Dx with RC 10/2016 (T2N0M0)
Port implanted 11/2016
Rad with 5FU December 2016-January 2016
LAR robotic with temp loop ileo 4/2016
ypT0N0M0 - cPR to chemo/rad
Ileostomy reversal 10/2017
LARS



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