Did anyone ever decide to go back to ileostomy after reversal

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Rikimaroo
Posts: 246
Joined: Tue Dec 20, 2016 8:48 pm

Did anyone ever decide to go back to ileostomy after reversal

Postby Rikimaroo » Fri May 17, 2019 7:00 pm

Just thinking about it but not sure
RC T3N1M0
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
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

Pyro70
Posts: 143
Joined: Mon Jan 21, 2019 4:25 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby Pyro70 » Fri May 17, 2019 8:33 pm

Definitely thought about it for sure at first. But now, close to a year later I won’t unless I have to...

Not sure your situation. I have a j-pouch, and things sure get better with time...
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

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

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby ozziej » Sat May 18, 2019 1:38 am

Within our LARS support group several members have opted for a reversal of the reversal but they have gone to a permanent colostomy rather than the loop ileostomy they had to allow the anastomosis to heal. As Miss Molly points out on her excellent post on this issue on this board, a permanent colostomy is generally much easier than the ileostomy.
If my current LARS management regimen ever stops working I'll have no hesitation in asking for a permanent colostomy.
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!! : )

User avatar
susie0915
Posts: 936
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby susie0915 » Sat May 18, 2019 8:22 am

I do daily tap water enemas. It is very simple to do and takes about 30-45 minutes in the morning. It empties my lower bowel and allows me 24 hours of bathroom free until I do again the next morning. It takes a little time and patience to become proficient and develop a routine. There are many others that also do tap water enemas. If you put in subject you will find a wealth of information. I have been doing them daily for two years and it has been a game changer. I can eat without fear, participate in daily life, my bottom feels better, and have been able to gain some weight back that I lost during treatment and dealing with LARS. There is also a facebook page for people dealing with low anterior resection syndrome and enemas are discussed at length as many do them. As always you should talk to your doctor and be prepared that he/she may not approve. Enemas were recommended to me by the doctors at the bowel control clinic at the University of Michigan. I was seeking help dealing with all the issues that we have to deal with after having a rectal resection. I was 15 months out from reversal. When I told my surgeon and oncologist I began doing enemas (they are from a different hospital than U of M) they both had no problem. Enemas are becoming more accepted, but there are some doctors that prefer their patients don't use them. It is worth trying before having another surgery and going to a colostomy. Many that use enemas can do every other day or only use when they need to ensure that they will not have to use the bathroom for an event. I chose to do daily as stool doesn't build up and makes the process much easier. I purchased a 2 quart enema bag on amazon for about $25 and it works really 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 Bowel blockage. surgery,early ileo rev, 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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5

Rikimaroo
Posts: 246
Joined: Tue Dec 20, 2016 8:48 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby Rikimaroo » Sat May 18, 2019 8:25 am

I know you mentioned it before and is sounds intimidating. There are days I am perfectly well and have maybe 1 bowel movement in the morning and 1 at night what I call blow outs. Sometimes I have one a day, then there are the days when I have multiple and it is really annoying as it hampers your life. I will look this up and see what is needed to be done. Thanks Susie :)
RC T3N1M0
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
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

User avatar
susie0915
Posts: 936
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby susie0915 » Sat May 18, 2019 8:30 am

Rikimaroo wrote:I know you mentioned it before and is sounds intimidating. There are days I am perfectly well and have maybe 1 bowel movement in the morning and 1 at night what I call blow outs. Sometimes I have one a day, then there are the days when I have multiple and it is really annoying as it hampers your life. I will look this up and see what is needed to be done. Thanks Susie :)


Yes it can sound intimidating at first. I was shocked when the doctor recommended it as I never had really used enemas. I had to order a bag to do a tap water enema for a test he ordered and realized it worked pretty well. It does take some practice at first to feel comfortable, but it is really pretty simple. His other option was to use daily mirlalax in order to get a clean out daily. I chose the enemas as I would have more control of when I emptied. I understand the apprehension, but since I have become comfortable doing them I have been able to travel and participate in activities I always avoided.
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 Bowel blockage. surgery,early ileo rev, 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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5

User avatar
CRguy
Posts: 9969
Joined: Sun Feb 10, 2008 6:00 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby CRguy » Sat May 18, 2019 11:33 pm

Just my 2 cents : :shock:

The daily enema has been a significant "saviour" for many folks here thru the years
as susie0915 has discussed !
( also search for some " tammylayne " posts )

YES ... a permanent ILEOstomy is very different from a permanent COLOstomy ...
SO be very sure what you are searching for AND asking for !

ME = 6 month temp ILEO = reversed in 2008.
Life not perfect BUTT .... DOable here and NOW !

My next 2 cents :

why not try daily enema for a while ... ????
if it is workable = DONE deal

if NOT ... review options and consider new stoma ....

hope this helps

Cheers and best wishes
CRguy

...ALWAYS on some kind of Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

tater
Posts: 109
Joined: Wed Jul 19, 2017 5:53 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby tater » Sun May 19, 2019 10:58 pm

susie0915 wrote:I do daily tap water enemas. It is very simple to do and takes about 30-45 minutes in the morning. It empties my lower bowel and allows me 24 hours of bathroom free until I do again the next morning. It takes a little time and patience to become proficient and develop a routine. There are many others that also do tap water enemas. If you put in subject you will find a wealth of information. I have been doing them daily for two years and it has been a game changer. I can eat without fear, participate in daily life, my bottom feels better, and have been able to gain some weight back that I lost during treatment and dealing with LARS. There is also a facebook page for people dealing with low anterior resection syndrome and enemas are discussed at length as many do them. As always you should talk to your doctor and be prepared that he/she may not approve. Enemas were recommended to me by the doctors at the bowel control clinic at the University of Michigan. I was seeking help dealing with all the issues that we have to deal with after having a rectal resection. I was 15 months out from reversal. When I told my surgeon and oncologist I began doing enemas (they are from a different hospital than U of M) they both had no problem. Enemas are becoming more accepted, but there are some doctors that prefer their patients don't use them. It is worth trying before having another surgery and going to a colostomy. Many that use enemas can do every other day or only use when they need to ensure that they will not have to use the bathroom for an event. I chose to do daily as stool doesn't build up and makes the process much easier. I purchased a 2 quart enema bag on amazon for about $25 and it works really well.


thanks for this info. You have given my wife some advice in the past. She has been doing the morning enema game for awhile now. She has been able to have good control but it does take her about two hours to do the routine. She'd like to hurry it up some. I wonder if she could go two days between enemas. I know her frustration is that she'll be doing well for some time than something changes and she has an issue. Could you PM some of the names of the facebook pages that we can look at for additional info on this subject. My wife is truing to heal a fistula from radiation so she has considered going back for a temp to allow that to heal, but she is worried in loosing the control and bowel training that she has been fighting for,
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18

NHMike
Posts: 2197
Joined: Fri Jul 21, 2017 3:43 am

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby NHMike » Mon May 20, 2019 9:28 am

I have thought about it. There were times in the first month when I thought that the Ileostomy bag was a lot easier than what I was going through.

I thought about the Ileostomy because that was what I was familiar with.

This morning was a mess for me but I think that I'm through with things for a day or two. It's just that those times can be very annoying or inconvenient. It was about 2.5 hours this morning which, overall, isn't that bad.

I have a lot of things still to try before resorting to the colostomy or ileostomy bag.
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

Rikimaroo
Posts: 246
Joined: Tue Dec 20, 2016 8:48 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby Rikimaroo » Wed May 22, 2019 9:09 am

Thanks for all the posts. Some days are just clustering, but sometimes big breaks in between. But its frustrating because I hate to be dealing with this. I am going to give it some more time. The enema is so intimidating and I was reading coffee enemas may be safer then tap water enema because of possible water poisoning. I know friends that are doing fine now after about 2 years out, but still have issues on some days. I think I have more control over it now then 6 months ago, but once I go for the first time of the day it because a clustering problem. I need the blow outs which is better then I know I might be done for a while, but that doesn't always happen. I take Imodium when I go too much, but then I think it causes more clustering.

It's hard to find a happy medium.
RC T3N1M0
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
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

NHMike
Posts: 2197
Joined: Fri Jul 21, 2017 3:43 am

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby NHMike » Wed May 22, 2019 9:25 am

Rikimaroo wrote:Thanks for all the posts. Some days are just clustering, but sometimes big breaks in between. But its frustrating because I hate to be dealing with this. I am going to give it some more time. The enema is so intimidating and I was reading coffee enemas may be safer then tap water enema because of possible water poisoning. I know friends that are doing fine now after about 2 years out, but still have issues on some days. I think I have more control over it now then 6 months ago, but once I go for the first time of the day it because a clustering problem. I need the blow outs which is better then I know I might be done for a while, but that doesn't always happen. I take Imodium when I go too much, but then I think it causes more clustering.

It's hard to find a happy medium.


I am just starting to experiment because I do hear about the people that have good results and I'm far from there. I did not ask the surgeon about enemas as we had a lot of other stuff to talk about.
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

Rikimaroo
Posts: 246
Joined: Tue Dec 20, 2016 8:48 pm

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby Rikimaroo » Thu May 23, 2019 10:05 am

Mike, I think you have some time for it to get more normal, your almost a year out, but I think a little more time might see more better results. It is still frustrating to deal with either way, but if 2 years pass by I an continue to have this problem the bag might be a big consideration since it was no issue at all. I can do anything not worry about being stuck on a toilet at some shitty bathroom in MacDonald or gas station because I have to stop somewhere.

I feel like I am stuck at home sometimes, but I have been ok. Today I went to a client to install a network switch and do some work and I have been good. No pooing yet for the day. I took two imodium last night just in case. I still take Metamucil at night with two imodium usually. I sometimes skip the metamucil and I wonder if this causes more clustering so I am going to stick with it for a while and not miss a day. I started to take probiotics and I think that help as well, but stop taking them off and on. I need to stick to a routine, but its hard, cause sometimes I go and then diarrhea kicks in or toxic poop and it starts to burn like a mother@#$@ lol...
RC T3N1M0
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
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

lindahudson
Posts: 2
Joined: Fri May 10, 2019 12:07 am

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby lindahudson » Wed Jun 12, 2019 7:03 am

Dear Rikimaroo, As per your report it is evident that it has not been too long since you had your reversal surgery in October 2018. It’s been 7 months and I agree getting adapted to a new lifestyle must be difficult and thus having second thoughts about reversal is quite obvious. One thing to keep in mind is that it may take several months for the bowel movements to settle out after either stoma reversal or primary surgery. As an example, some patients with rectal cancer had surgery with diversion and then underwent 4-6 months of chemo, then waited another 2 months for reversal, and they haven’t “pooped” in months. It may take time to get used to using your bottom again. Why don’t you try with the enema and lifestyle changes to achieve better results? Do consult your doctor as it can be the right decision to make. Be patient and let things gradually fall in place. Hoping the best for you.
Linda Hudson is a freelancer blogger for over a year. She enjoys reading and writing about health & wellness. A veteran in her field, she likes spreading words about health, fitness, diet and health issues to the world and bring awareness amongst people. Off-duty, she is a lyricist, composing her songs.

NHMike
Posts: 2197
Joined: Fri Jul 21, 2017 3:43 am

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby NHMike » Wed Jun 12, 2019 2:46 pm

Rikimaroo wrote:Mike, I think you have some time for it to get more normal, your almost a year out, but I think a little more time might see more better results. It is still frustrating to deal with either way, but if 2 years pass by I an continue to have this problem the bag might be a big consideration since it was no issue at all. I can do anything not worry about being stuck on a toilet at some shitty bathroom in MacDonald or gas station because I have to stop somewhere.

I feel like I am stuck at home sometimes, but I have been ok. Today I went to a client to install a network switch and do some work and I have been good. No pooing yet for the day. I took two imodium last night just in case. I still take Metamucil at night with two imodium usually. I sometimes skip the metamucil and I wonder if this causes more clustering so I am going to stick with it for a while and not miss a day. I started to take probiotics and I think that help as well, but stop taking them off and on. I need to stick to a routine, but its hard, cause sometimes I go and then diarrhea kicks in or toxic poop and it starts to burn like a mother@#$@ lol...


I've been losing weight steadily with a lot of fasting and dropping another 15 pounds will get me to normal BMI and very, very skinny. This will reduce my Base Metabolism Rate which means that I won't need to eat as much to maintain weight. The experimentation has given me tools and maybe I can assemble the tools to something where I don't have to fast three or four days a week. I am also thinking that this stuff will take much more time to find a solution. I'd prefer not getting a colostomy as it would be limiting for my activity.
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

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: Did anyone ever decide to go back to ileostomy after reversal

Postby Swirdfish » Sat Jun 15, 2019 8:45 pm

Rik,

Im about 2 yrs out from my reversal. Yours is only well what I would call recent. It is very hard, but it takes a long time to recover and get some norm back. I still think to this day, that its still getting better, but I believe the 2yr mark is the cutoff, and anything after that you could consider perhaps the normal for life.

I live a pretty normal life, with some issues now and then, but I think its all food related. Still sometimes I need to run to the toilet, and clustering but again I think its food. Other then that I consider myself to have a pretty normal life.

Def give it time bro.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17


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