Is a ileostomy reversal worth it for a 60 year old guy?

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csteven
Posts: 2
Joined: Sun Feb 17, 2019 10:11 pm

Is a ileostomy reversal worth it for a 60 year old guy?

Postby csteven » Sun Feb 17, 2019 10:51 pm

My doctor is pushing me for a reversal. I had a LAR. After the LAR and pre-surgery chemo/radio, my rectal cancer was downgraded from stage 3b to stage 0. I had 27cm removed (10.6") of my rectum and sigmoid. I also had some burning / scarring due to the earlier radio. I don't love my ileo, but I don't hate it either. I can manage it. I'm reading all the horror stories after reversal and now I'm thinking maybe living with a ileo is better. Any comments would be appreciated, both pro and con. I'm 60 years old. ~ Steve

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby ozziej » Mon Feb 18, 2019 4:09 am

Hi Steve,
Your question is very valid. It's a tough one. I can only give my opinion based on my personal experience. I had a ULAR at age 56, losing all of my rectum and sigmoid colon. I was reversed 12 weeks after the resection. I now have major LARS. It's manageable but, like you, so was my temporary ileostomy. My understanding is that a permanent colostomy is generally easier to manage than an ileostomy, so it's likely that a permanent colostomy would have given me a better quality of life.
A lot depends on the lifestyle you lead. Working, socializing and travelling are all very challenging with LARS. Having said that, a permanent colostomy is not without its challenges. The most effective treatment for LARS seems to be daily enemas. Once a routine has been established, these are no more cumbersome than managing a bag.
Age really isn't a determining factor. What is really important is how low was your anastomosis? If you have at least some remaining rectum then your chances of developing LARS are reduced. A straight coloanal connect like me greatly increases the chances of LARS.
It is usually possible to reverse the reversal. Indeed, I know of a few people who were reversed and then made the decision to move to a permanent colostomy. So you could always try reversal and then, if quality of life is not acceptable, opt for a bag.
Wishing you all the best whichever path you choose.
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby Pyro » Mon Feb 18, 2019 6:58 am

ozziej wrote:Hi Steve,
Your question is very valid. It's a tough one. I can only give my opinion based on my personal experience. I had a ULAR at age 56, losing all of my rectum and sigmoid colon. I was reversed 12 weeks after the resection. I now have major LARS. It's manageable but, like you, so was my temporary ileostomy. My understanding is that a permanent colostomy is generally easier to manage than an ileostomy, so it's likely that a permanent colostomy would have given me a better quality of life.
A lot depends on the lifestyle you lead. Working, socializing and travelling are all very challenging with LARS. Having said that, a permanent colostomy is not without its challenges. The most effective treatment for LARS seems to be daily enemas. Once a routine has been established, these are no more cumbersome than managing a bag.
Age really isn't a determining factor. What is really important is how low was your anastomosis? If you have at least some remaining rectum then your chances of developing LARS are reduced. A straight coloanal connect like me greatly increases the chances of LARS.
It is usually possible to reverse the reversal. Indeed, I know of a few people who were reversed and then made the decision to move to a permanent colostomy. So you could always try reversal and then, if quality of life is not acceptable, opt for a bag.
Wishing you all the best whichever path you choose.


I have no rectum left, I was told there would be no reversal because lack of a rectum by my doctors at MD Anderson. You’re saying there can be a reversal?
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby ozziej » Mon Feb 18, 2019 7:46 am

Yes. I have no rectum, straight coloanal anastomosis. However, my anal sphincters are intact. For those where anal sphincters are compromised, an APR with permanent colostomy is usually necessary. Fifteen years ago I would have had to have a permanent colostomy too but ULAR is now possible.
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby Badass » Mon Feb 18, 2019 8:03 am

I had a reversal and then LARS so now I do daily tap water enema and now have no LARS symptoms at all. Everyone has their own preference but I feel my lifestyle is about as close to pre-cancer as I can get.
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

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susie0915
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Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby susie0915 » Mon Feb 18, 2019 8:54 am

I also do daily tap water enemas. There are many with very little or no rectum left that do this. It is a very easy process, takes me about 30 minutes every morning and gives me 24 hours free from the bathroom until I do again the next morning. Doing the daily enemas to me is less maintenance than a colostomy or ileostomy would be. Generally you have to wait until healing from reversal is complete. I went to the bowel control clinic at the University of Michigan about a year and a half after my reversal for help. After some tests, referral to a dietician and pelvic floor physical therapist(both very helpful), the gastro there recommended either daily miralax or tap water enemas. I chose the enemas as it gave me the control of when I would empty my bowel. The idea behind the enema is to just empty the lower bowel, so I use 4 cups of water. Some use a little less, others use more. It takes a little time to become proficient but once you become comfortable with the process and develop your own routine it is very simple. Most use enema bags (I purchased mine on amazon for about $25). It may be something to talk to your surgeon about, not all doctors recommend enemas, but it is become more accepted. When I told my surgeon (who is from a different hospital) I was doing the enemas he was okay with it, just happy that I was doing well.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby Gravelyguy » Mon Feb 18, 2019 10:50 am

I am 53 and had ULAR surgery Oct. 2017and reversal June 2018. No real rectum left, less than .5 cm, and most days things are pretty normal. The only thing I currently deal with is frequency issues every 3-4 days but nothing real difficult and it seems to continue to get better even this far out. I also still wear liners in my underwear just in case. I take a good probiotic and follow advice I received on here but can't remember who posted it so I can't give them credit. The advice was once you regain bowel control, when you feel the urge to go, hold it in for awhile by using your pelvic floor muscles. This seems to stretch the new rectum thus creating more storage. My stool is getting bigger and urgency has definitely dropped since I started doing this.

It is maddening how different we all respond to the surgery but is is great that together we can figure out ways to get back to a more normal lifestyle.

I would have much prefered a daily enema to dealing with the ileostomy if those were my options. I really did not like the ileostomy. I didn't have any real problems with it and could have stayed with it if need be, but it feels so good to not have a bag hanging on me.



Dave
Last edited by Gravelyguy on Mon Feb 25, 2019 7:34 am, edited 1 time in total.
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 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

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

Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby MissMolly » Mon Feb 18, 2019 2:23 pm

Csteven:
If you decide to keep your loop ileostomy . . .

The United Ostomy Association of America offers a welcoming in-line support forum as well as information on living one’s best life an ostomy. Feel free to stop by the UOAA.

www.uoaa.org

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.

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby NHMike » Mon Feb 18, 2019 5:39 pm

Hello Steve,

I'm almost 60 and had a reversal at the end of July last year. It was quite horrible the first couple of weeks but part of that was that I didn't know what to expect. The surgeon told me at the first post-op that the first week is horrible and that it can take a year to get to someplace normal. Things have been on an improving trajectory but there are still a lot of issues that I have. The surgeon offered a permanent colostomy if things were too difficult. There are times when I thought that the ileostomy was easier to manage than LARS but the downside is that you require regular supplies and I found that the ileostomy limited some of my activities. I would really like things to work out with the reversal but I can't say at this time that they will.

There are methods to improve outcomes such as the enemas that have been mentioned but my surgeon said no when I asked about them.

Furthermore, I have scar tissue around the reversal site and they can cause or contribute to small bowel obstructions which are extremely painful.

There is a facebook group dedicated to LARS and you'll get a lot of tips on how people deal with it. I think that all of the people there do have the option for a permanent colostomy and chose to deal with LARS instead means that a lot of people prefer dealing with LARS than a permanent colostomy. I used to be on that Facebook group but got kicked off of Facebook for using a privacy browser which blocked their ability to do tracking and apparently they don't like that.

Good luck on your decision - if you have questions on what happens after reversal and when, ask away as there are lots of people here that have had them. There are folks here with permanent colostomies too and a lot of us have probably had ileostomies.
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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susie0915
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Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby susie0915 » Mon Feb 18, 2019 6:17 pm

NHMike wrote:Hello Steve,
Mike,
Did your surgeon say no to enemas because it was too soon after reversal when you asked? I know there needs to be a healing period. I was almost a year and a half after reversal when I began doing them. I am on that LARS page and there are some that were given the okay or surgeon even suggested enemas early in their recovery process. I have been doing them for 2 years now and don't know how I would be at this point if I was still dealing with alot LARS issues.
I'm almost 60 and had a reversal at the end of July last year. It was quite horrible the first couple of weeks but part of that was that I didn't know what to expect. The surgeon told me at the first post-op that the first week is horrible and that it can take a year to get to someplace normal. Things have been on an improving trajectory but there are still a lot of issues that I have. The surgeon offered a permanent colostomy if things were too difficult. There are times when I thought that the ileostomy was easier to manage than LARS but the downside is that you require regular supplies and I found that the ileostomy limited some of my activities. I would really like things to work out with the reversal but I can't say at this time that they will.

There are methods to improve outcomes such as the enemas that have been mentioned but my surgeon said no when I asked about them.

Furthermore, I have scar tissue around the reversal site and they can cause or contribute to small bowel obstructions which are extremely painful.

There is a facebook group dedicated to LARS and you'll get a lot of tips on how people deal with it. I think that all of the people there do have the option for a permanent colostomy and chose to deal with LARS instead means that a lot of people prefer dealing with LARS than a permanent colostomy. I used to be on that Facebook group but got kicked off of Facebook for using a privacy browser which blocked their ability to do tracking and apparently they don't like that.

Good luck on your decision - if you have questions on what happens after reversal and when, ask away as there are lots of people here that have had them. There are folks here with permanent colostomies too and a lot of us have probably had ileostomies.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby NHMike » Mon Feb 18, 2019 6:22 pm

susie0915 wrote:
NHMike wrote:Hello Steve,
Mike,
Did your surgeon say no to enemas because it was too soon after reversal when you asked? I know there needs to be a healing period. I was almost a year and a half after reversal when I began doing them. I am on that LARS page and there are some that were given the okay or surgeon even suggested enemas early in their recovery process. I have been doing them for 2 years now and don't know how I would be at this point if I was still dealing with alot LARS issues.
I'm almost 60 and had a reversal at the end of July last year. It was quite horrible the first couple of weeks but part of that was that I didn't know what to expect. The surgeon told me at the first post-op that the first week is horrible and that it can take a year to get to someplace normal. Things have been on an improving trajectory but there are still a lot of issues that I have. The surgeon offered a permanent colostomy if things were too difficult. There are times when I thought that the ileostomy was easier to manage than LARS but the downside is that you require regular supplies and I found that the ileostomy limited some of my activities. I would really like things to work out with the reversal but I can't say at this time that they will.

There are methods to improve outcomes such as the enemas that have been mentioned but my surgeon said no when I asked about them.

Furthermore, I have scar tissue around the reversal site and they can cause or contribute to small bowel obstructions which are extremely painful.

There is a facebook group dedicated to LARS and you'll get a lot of tips on how people deal with it. I think that all of the people there do have the option for a permanent colostomy and chose to deal with LARS instead means that a lot of people prefer dealing with LARS than a permanent colostomy. I used to be on that Facebook group but got kicked off of Facebook for using a privacy browser which blocked their ability to do tracking and apparently they don't like that.

Good luck on your decision - if you have questions on what happens after reversal and when, ask away as there are lots of people here that have had them. There are folks here with permanent colostomies too and a lot of us have probably had ileostomies.


I'm not sure of the reason. I asked and she just replied "No." - kind of like how professors mark papers. I didn't ask as her answer seemed pretty clear. Maybe she says yes later on. It's like the Imodium - she didn't tell me about it until sometime after the surgery as I suspect that it doesn't work until the large intestine wakes up.
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: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby justin case » Fri Feb 22, 2019 5:37 pm

It's simple for me, I had 3 cm left, and my sphincters, For the last 7 years, I completed my job assignments, by waiting for lunch at 11 AM, no breakfast. My hours were 6AM until 2 PM. If I ate, the deluge would come . I'm retired now, and 7 years older !

Regards,
Bro Nut
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

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby AppleTree » Mon Feb 25, 2019 12:15 am

I have no bowel and the DRs had to cut into my sphincter muscles to get clear margins. Due to an infection, I had my reversal very soon. I do remember the 1st 2 weeks of very painful clustering, but they gave me strong pain killer and told me to try to time things around that. But it hurt like crazy. But, as promised, my body adjusted.

When I feel the urge to go, I move to the bathroom, but do try to hold it as long as possible. Trying to train those muscles to give me a bit of extra time when I am out in public. My issue now is slight fecal incontinence on some days, fine others, and explosive runs others! So, I do watch what I eat.

I get a Sandostatin shot every month and take 6 lomotol a day. I have gone from 150 to 103 and I am 5'8".

The surgeons feel the surgery was a success. But, unless I can gain some weight, I question that! But. I am functioning!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Is a ileostomy reversal worth it for a 60 year old guy?

Postby susie0915 » Mon Feb 25, 2019 8:42 am

AppleTree wrote:I have no bowel and the DRs had to cut into my sphincter muscles to get clear margins. Due to an infection, I had my reversal very soon. I do remember the 1st 2 weeks of very painful clustering, but they gave me strong pain killer and told me to try to time things around that. But it hurt like crazy. But, as promised, my body adjusted.

When I feel the urge to go, I move to the bathroom, but do try to hold it as long as possible. Trying to train those muscles to give me a bit of extra time when I am out in public. My issue now is slight fecal incontinence on some days, fine others, and explosive runs others! So, I do watch what I eat.

I get a Sandostatin shot every month and take 6 lomotol a day. I have gone from 150 to 103 and I am 5'8".

The surgeons feel the surgery was a success. But, unless I can gain some weight, I question that! But. I am functioning!


I had issues with gaining weight also after reversal. I lost almost 40 lbs during my year of treatment. Once I began doing daily enemas, I have been able to gain back almost 15 lbs. I am not afraid to eat, my bottom feels better, and only go when I do the enema and not again until I do again the next morning. I have also been able to stop taking Imodium and citrucel. I do take 2 lomotil per day for peace of mind. I do think it helps with any rectal spasms, but mostly like I said gives me peace of mind. I don't really need to stop bowel movements. It may be worth talking to your surgeon about if you are having problems with being able to gain weight.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5


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