Advice - new ileostomy reversal

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Zod
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Advice - new ileostomy reversal

Postby Zod » Sun Dec 22, 2019 9:09 pm

Y'all,

I had my ileostomy from Feb 2019 reversed last week (Dec 11). Surgery was simultaneous with curative-intent liver resection plus hernia repair, so 3 surgeons in one go.

Wonder what advice I can get regarding relentless fecal incontinence that started 2 days ago. I will usually get no warning that I need to poop and will within 5 seconds be soiling whatever I am wearing. I'm using an makeshift rig of urinary incontinence pads, wads of toilet paper, and tight shorts for now - and not leaving home.

My original surgery removed all of the rectum and was barely able to be sphincter-sparing.

I've started doing kegel (pelvic floor muscle) exercises but those can take months to work and may not work in any case according to my research.

My colon doctor recommends low-residue diet which I am following.

I searched these forums for "LARS" (lower anterior resection syndrome) and am reading some of those threads.

Thanks.

Zod

Zod
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Re: Advice - new ileostomy reversal

Postby Zod » Sun Dec 22, 2019 9:13 pm

Forgot to mention 2 things:

Defecation bouts - 27+ yesterday (lost count), 14 so far today as of 6 pm.

I'm adjusting dose on metamucil to soften stool, may have overcorrected. Constipated yesterday but last 3 bouts today watery or gelatinous.

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Jacques
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Re: Advice - new ileostomy reversal

Postby Jacques » Mon Dec 23, 2019 12:12 am


Rock_Robster
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Location: Melbourne, Australia

Re: Advice - new ileostomy reversal

Postby Rock_Robster » Mon Dec 23, 2019 3:13 am

Hi Zod, sorry to hear it’s been challenging. I’m lining up for an ileo reversal soon too. My surgeon has forewarned me that many patients are ‘essentially incontinent’ for the first couple of weeks, but that it rapidly improves after that. I realise that’s no help now, but my hope is that this is very temporary for you. I believe most surgeons aren’t willing to consider serious further interventions until a year after reversal, as this is how long the body can take to fully adapt to a LAR. It sucks and I’m not looking forward to it, but I hope for both of us it’s a quick restoration of function. Some of the resources Jacques has posted look helpful too and I’ll be reading up. Unfortunately some of these things just seem to take time I guess!

Good luck,
Rob
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

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Jacques
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Re: Advice - new ileostomy reversal

Postby Jacques » Mon Dec 23, 2019 3:53 pm

Zod wrote:... I'm using an makeshift rig of urinary incontinence pads, wads of toilet paper, and tight shorts for now ...

Instead of just using wads of toilet paper alone you might try adding an anal tampon as a sort of plug. I'm not sure how well it will work with watery stools, but it is supposed to work OK with solid stools. If you have already tried everything else and are still looking for options you might give this one a try.

Gravelyguy
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Re: Advice - new ileostomy reversal

Postby Gravelyguy » Mon Dec 23, 2019 8:33 pm

Sorry for the rough start. It does get better. I found using depends and having a sense of humor helped for the first couple of weeks. If your bum gets sore, I found a shallow bath with Dreft soap really helped.


How long did you have an ileostomy? A lot of the issue is getting your colon to wake up.

I am also a big believer in a good probiotic. It certainly seems to have helped me.

Hang in there,

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!

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Jacques
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Re: Advice - new ileostomy reversal

Postby Jacques » Tue Dec 24, 2019 2:02 am

Rock_Robster wrote:...I’m lining up for an ileo reversal soon too...

One of the other things you could do in preparation for your up-coming January 20th ileo reversal is to read some of the old posts by MissMolly on the anatomy related to ULAR surgeries in an effort to try to understand what functions are present in normal bowel movements and what functions are now missing or compromised due to the prior ULAR surgery.

You can do this by using the procedure described in the post below to do a search by the keyword LEVATOR.
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58013&p=456986#p456986

The levator ani muscles and the pubis recti muscles are key elements in normal bowel movements. So too are the internal and external sphincter muscles. If any of these were damaged or removed in the original surgery, or if the related blood supplies or neural connections to these muscles were severed, there will be problems in restoring full functionality to the defecation process.

Image

In the mean time you might also try to find a local proctologist who can do ano-rectal manometry measurements to determine your baseline sphincter muscle pressure readings.
https://www.thdlab.us/healthcare-professionals/products/thd-anopress

or to take a fluoroscopic video of defecation and "clustering".
https://m.youtube.com/watch?v=Vs0rx56AWk8

Zod
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Re: Advice - new ileostomy reversal

Postby Zod » Sat Jan 04, 2020 1:18 am

Gravelyguy wrote:Sorry for the rough start. It does get better. I found using depends and having a sense of humor helped for the first couple of weeks. If your bum gets sore, I found a shallow bath with Dreft soap really helped.


How long did you have an ileostomy? A lot of the issue is getting your colon to wake up.

I am also a big believer in a good probiotic. It certainly seems to have helped me.

Hang in there,

Dave


I had the ileostomy for 10 months. I'll ask colorectal surgeon about probiotics and other stuff at my post-surgical appointment next week. I'm following their lead exactly for "internal" stuff (not doing enemas until 12 weeks after surgery, taking the meds and supplements they suggest, etc). Similarly, I'll need to wait at least 12 weeks before trying any sort of anal plug.

Trying to monitor diet to see what may induce problems that that is difficult since stuff can take 1-3 days to pass through so if I have a bad bout today I can't point at which food caused it unless and until I know enough about which foods are OK so that I can then try "new" foods one at a time for several days.

We got a heated bidet which helps a lot. Using zinc oxide cream when it starts hurting also helps a lot. Key is keeping feces off the skin as much as possible so I end up showering a lot for those times things get past where the bidet cleans.

Zod
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Re: Advice - new ileostomy reversal

Postby Zod » Sat Jan 04, 2020 1:21 am

Jacques wrote:
Rock_Robster wrote:...I’m lining up for an ileo reversal soon too...

One of the other things you could do in preparation for your up-coming January 20th ileo reversal is to read some of the old posts by MissMolly on the anatomy related to ULAR surgeries in an effort to try to understand what functions are present in normal bowel movements and what functions are now missing or compromised due to the prior ULAR surgery.

You can do this by using the procedure described in the post below to do a search by the keyword LEVATOR.
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58013&p=456986#p456986

The levator ani muscles and the pubis recti muscles are key elements in normal bowel movements. So too are the internal and external sphincter muscles. If any of these were damaged or removed in the original surgery, or if the related blood supplies or neural connections to these muscles were severed, there will be problems in restoring full functionality to the defecation process.

Image

In the mean time you might also try to find a local proctologist who can do ano-rectal manometry measurements to determine your baseline sphincter muscle pressure readings.
https://www.thdlab.us/healthcare-professionals/products/thd-anopress

or to take a fluoroscopic video of defecation and "clustering".
https://m.youtube.com/watch?v=Vs0rx56AWk8


This stuff looks really useful. I want to understand what is going on biomechanically but nobody gave me this type of information. They give me specific things to do or try but no global picture of what is going on.

Rikimaroo
Posts: 280
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Location: Florida

Re: Advice - new ileostomy reversal

Postby Rikimaroo » Sun Jan 05, 2020 1:15 am

after a year of dealing with no rectum and ileostomy reversal and pooping the normal way, I decided to get a permanent colostomy. I never been happier. No worries about pooping myself while I driving, or frequent pooping that seem to never end, or painful bum, or annoying back pain...I will say there were some days I felt perfectly normal and pooped one big one and done for the day, but most days were worse then good. I would have frequent bowel movements and sometimes in the night, affected my sleep. I would go 10-12 times, and this was a good 8 months out, to a year. Just wouldn't get better and I didn't want to wait any longer. THe colostomy is easy, but kind of annoying as well, because poop can get stuck up top and you have to constantly push it down through the bag of course, don't have to open it. There are times I just go in bathroom open it and clean it like your wiping your arse and then put it back on. I have a 2 piece system it snaps on and off.

You would have to decide if eventually you want to go this route. It's an easy decision if your life is just miserable.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

tminor5
Posts: 40
Joined: Wed Jun 13, 2018 11:46 am

Re: Advice - new ileostomy reversal

Postby tminor5 » Sun Jan 05, 2020 5:47 pm

My husbands ileo reversal was Oct 25. He had a colostomy that was reversed in March and given the temp ileo. His has gone pretty smoothly. I honestly believe it is because he had to have his colon stretched before the ileo reversal. His colostomy reconnect was only a 1mm opening. He was going in every 2 weeks and having to do enemas. He does have to take miralax because he was going every 2-3 days and they didn’t want him to go that far between movements. He now goes 1-2 a day. He will occasionally have a bad day, because of what he eats, but it usually hits him at night. Even then he only goes 2-3 times and then he’s back to his normal. He was also on a low fiber diet for 2 months while they waited to check and make sure this connection wasn’t so small.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER bowel obstruction
5/26/18 Colonoscopy couldn't insert stint
5/27/18 Surgery removed 18", not seen on any near by organs, colostomy due to infection
6/25/18 1st FOLFOX (12 cycles)
11/26/18 Last chemo
12/17/18 Colonoscopy clear
3/29/19 Colostomy takedown (temp illeo because of scaring)
5/23/19 Scan (sm node lung believe scar tissue)
6/20-7/25-8/9-8/20-9/5-9/26 Colon stretch for illeo takedown
10/3/19 Scan (node same)
10/25/19 Ileo takedown

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Advice - new ileostomy reversal

Postby NHMike » Sun Jan 05, 2020 10:51 pm

Zod wrote:Y'all,

I had my ileostomy from Feb 2019 reversed last week (Dec 11). Surgery was simultaneous with curative-intent liver resection plus hernia repair, so 3 surgeons in one go.

Wonder what advice I can get regarding relentless fecal incontinence that started 2 days ago. I will usually get no warning that I need to poop and will within 5 seconds be soiling whatever I am wearing. I'm using an makeshift rig of urinary incontinence pads, wads of toilet paper, and tight shorts for now - and not leaving home.

My original surgery removed all of the rectum and was barely able to be sphincter-sparing.

I've started doing kegel (pelvic floor muscle) exercises but those can take months to work and may not work in any case according to my research.

My colon doctor recommends low-residue diet which I am following.

I searched these forums for "LARS" (lower anterior resection syndrome) and am reading some of those threads.

Thanks.

Zod


I use CVS brand male diapers - I like them better than Depends as they are woven so that they breathe.

I put in three female pads (Always 4 or 5 in Ultra-Thin). Ideally I don't soil any of them but they are easy to replace if I have to.

If you need time to do things without going to the bathroom, you'll want to figure out how to get the "cleanout". There are a few ways to get the cleanout and it means that you can go about your business without worrying. I like to run, play tennis and do other things and the cleanout makes it a lot easier to do this without worrying. Fiber can help add bulk - that is so you don't have to go to the bathroom every 15 minutes for four hours.

I had pretty good success fasting three to four days a week but it's pretty difficult to maintain.

I've kind of adapted but it restricts me or slows me down.

I assembled a kit which helps - it's a small medical bag and I carry six peristaltsis bottls (for cleaning with water as a lot of toilet paper can be irritating), two diapers with pads, 11 pads, small waste bags and a brick of Kirkland wipes. I have not had an emergency that this kit couldn't handle except for one really bad time when I took Imodium with a small bowel obstruction.

Imodium is an OTC drug that can slow things down a lot if you need to do something for a while where you won't go to the bathroom. I recommend avoiding it if you have a Small Bowel Obstruction. SBOs can develop from scar tissue several months after surgery.

I have the superlong pads (7x30 inches), Abre' San (really big pads but hard to secure to underwear). When things are going well, I just put a pad in my shorts or underwear and that gets the job done.
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


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