Digestive issues after rectal cancer treatment

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rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Digestive issues after rectal cancer treatment

Postby rockhound » Sun Oct 29, 2017 10:15 pm

You're still doing really well. Even before resection bad days can happen. So happy to hear you are having such success.


Thanks! Need to dial back a bit on other food too- a little too much everything right now (first time I've eaten my nemesis- cheese popcorn in months yesterday) and I'm back in the bathroom a bunch.. But it's all an experiment so I'm ok with the side affects..
45 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans
5/20 - CT, NED
5/21 - CT, NED (4 yr. scan)

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Digestive issues after rectal cancer treatment

Postby teachpdx » Mon Oct 30, 2017 3:14 pm

Hi KCP. I'm 5+ years post ileostomy reversal and have done a great deal to manage my bowels. I also have increased my carb intake to about double. I can eat veggies but best if eaten with potatoes - seems to be best carb for binding. MD Anderson has a program that's worth looking into. Things that I find helpful:

Don't snack - eat distinctive meals and drink as little liquid as possible with meal.

If eating soup/veggies make sure to include bread to absorb. I make sourdough bread once a week and it has helped immensely.

Take immodium if this works for you.

If you feel your colon cramping run for the bathroom.

I still have accidents but it's much better with a lot of trial & error.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Digestive issues after rectal cancer treatment

Postby rockhound » Mon Oct 30, 2017 4:07 pm

teachpdx wrote:Hi KCP. I'm 5+ years post ileostomy reversal and have done a great deal to manage my bowels. I also have increased my carb intake to about double. I can eat veggies but best if eaten with potatoes - seems to be best carb for binding. MD Anderson has a program that's worth looking into. Things that I find helpful:

Don't snack - eat distinctive meals and drink as little liquid as possible with meal.

If eating soup/veggies make sure to include bread to absorb. I make sourdough bread once a week and it has helped immensely.

Take immodium if this works for you.

If you feel your colon cramping run for the bathroom.

I still have accidents but it's much better with a lot of trial & error.


While only based on a few weeks, I second the "no snacking" - for me at least, snacking does seem to make things worse.
45 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans
5/20 - CT, NED
5/21 - CT, NED (4 yr. scan)

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Digestive issues after rectal cancer treatment

Postby weisssoccermom » Mon Oct 30, 2017 9:25 pm

YEARS ago when I had my gallbladder removed, I had severe problems with diarrhea.....didn't matter what I ate or didn't eat.....and apparently the 'diarrhea' thing is a common problem (although the docs never tell YOU about it unless YOU ask) after gallbladder surgery. Anyway, after I approached my surgeon, he put me on a drug called Questran. A few years back, I mentioned it on this board and there have been members who have tried it with great success. It works totally differently than something like Immodium. Originally labeled as a cholesterol lowering drug, QUESTRAN is also used to control diarrhea that can't be controlled by other OTC meds like Immodium or even Rx meds like Lomotil. QUESTRAN binds with the bile salts in your intestine to help control the diarrhea. I'm not saying it will work BUT....it is certainly worth asking about.

The only downside is that it is a powder that must be mixed with a liquid. It's not gritty like Metamucil.....just rather yucky. The typical dosing is for patients with high cholesterol problems (honestly, it is an older drug so seriously doubt how many patients take this drug anymore instead of statins) so BEWARE. Take TOO much and it binds you up....almost TOO much. In my experience, it is better to start lower and work your way up to the maximum dose. Piece of advice....drink plenty of water. Also, if anyone takes QUESTRAN, do NOT mix it with anything carbonated. It will act like the volcano experiment school age kids do! (OJ works really well for mixing).

Just something to think about and bring up with your doctor.
Good luck.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Digestive issues after rectal cancer treatment

Postby susie0915 » Tue Oct 31, 2017 8:12 am

weisssoccermom wrote:YEARS ago when I had my gallbladder removed, I had severe problems with diarrhea.....didn't matter what I ate or didn't eat.....and apparently the 'diarrhea' thing is a common problem (although the docs never tell YOU about it unless YOU ask) after gallbladder surgery. Anyway, after I approached my surgeon, he put me on a drug called Questran. A few years back, I mentioned it on this board and there have been members who have tried it with great success. It works totally differently than something like Immodium. Originally labeled as a cholesterol lowering drug, QUESTRAN is also used to control diarrhea that can't be controlled by other OTC meds like Immodium or even Rx meds like Lomotil. QUESTRAN binds with the bile salts in your intestine to help control the diarrhea. I'm not saying it will work BUT....it is certainly worth asking about.

The only downside is that it is a powder that must be mixed with a liquid. It's not gritty like Metamucil.....just rather yucky. The typical dosing is for patients with high cholesterol problems (honestly, it is an older drug so seriously doubt how many patients take this drug anymore instead of statins) so BEWARE. Take TOO much and it binds you up....almost TOO much. In my experience, it is better to start lower and work your way up to the maximum dose. Piece of advice....drink plenty of water. Also, if anyone takes QUESTRAN, do NOT mix it with anything carbonated. It will act like the volcano experiment school age kids do! (OJ works really well for mixing).

Just something to think about and bring up with your doctor.
Good luck.

My oncologist gave me questran during chemo. Since I had my reversal 4 weeks after surgery due to a blockage, I had issues with diarrhea during chemo. It works pretty well. It is another option.
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

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Digestive issues after rectal cancer treatment

Postby rockhound » Tue Oct 31, 2017 10:35 am

weisssoccermom wrote:YEARS ago when I had my gallbladder removed, I had severe problems with diarrhea.....didn't matter what I ate or didn't eat.....and apparently the 'diarrhea' thing is a common problem (although the docs never tell YOU about it unless YOU ask) after gallbladder surgery. Anyway, after I approached my surgeon, he put me on a drug called Questran. A few years back, I mentioned it on this board and there have been members who have tried it with great success. It works totally differently than something like Immodium. Originally labeled as a cholesterol lowering drug, QUESTRAN is also used to control diarrhea that can't be controlled by other OTC meds like Immodium or even Rx meds like Lomotil. QUESTRAN binds with the bile salts in your intestine to help control the diarrhea. I'm not saying it will work BUT....it is certainly worth asking about.

The only downside is that it is a powder that must be mixed with a liquid. It's not gritty like Metamucil.....just rather yucky. The typical dosing is for patients with high cholesterol problems (honestly, it is an older drug so seriously doubt how many patients take this drug anymore instead of statins) so BEWARE. Take TOO much and it binds you up....almost TOO much. In my experience, it is better to start lower and work your way up to the maximum dose. Piece of advice....drink plenty of water. Also, if anyone takes QUESTRAN, do NOT mix it with anything carbonated. It will act like the volcano experiment school age kids do! (OJ works really well for mixing).

Just something to think about and bring up with your doctor.
Good luck.


I don't have a gallbladder (removed ~5 yrs ago). Perhaps it's worth checking into this? I remember reading about Questran way back after the gallbladder removal, but have not thought about it in the context of post-cancer treatment.. thanks!
45 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans
5/20 - CT, NED
5/21 - CT, NED (4 yr. scan)

outdoors30328
Posts: 3
Joined: Sun Dec 24, 2017 6:20 pm

Re: Digestive issues after rectal cancer treatment

Postby outdoors30328 » Mon Dec 25, 2017 4:30 pm

susie0915 wrote:
KCP wrote:Thank you all for the great advice. They give me quite a few options. I'm meeting with a nutritionist on Thursday. This is a wonderful site; I've been looking for a place where I can get some answers.

I found it helpful when I met with the dietician. She started me on a FODMAP diet. It is somewhat restrictive. No gluten, dairy, high fructose corn syrup. Then foods are added slowly to see what may give a bad reaction. It helped me identify certain foods I may want to avoid. Once I started doing the enemas though, I have been able to eat pretty much what I want, but I do still try to be careful and not overdo it. Good luck, I hope you find some answers and success. But, if you have any questions about the daily enema you can pm myself or Tammylayne. It may sound like a strange solution to you, but it really isn't bad at all. Kind of like patients that have a permanent colostomy and irrigate rather than wear a bag. But many do find solutions with time, diet, meds, and physical therapy. Again, good luck.


I'm just starting to try the daily enema idea but the first time was a bit of a struggle. I've got a question, I've heard most people here say it takes about 30 minutes out of there day. Does that mean it takes that long for the enema to go inside of you? Just not sure I'm doing it right. I know that sounds silly but it's harder than it sounds.

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Digestive issues after rectal cancer treatment

Postby susie0915 » Tue Dec 26, 2017 10:39 am

outdoors30328 wrote:
susie0915 wrote:
KCP wrote:Thank you all for the great advice. They give me quite a few options. I'm meeting with a nutritionist on Thursday. This is a wonderful site; I've been looking for a place where I can get some answers.

I found it helpful when I met with the dietician. She started me on a FODMAP diet. It is somewhat restrictive. No gluten, dairy, high fructose corn syrup. Then foods are added slowly to see what may give a bad reaction. It helped me identify certain foods I may want to avoid. Once I started doing the enemas though, I have been able to eat pretty much what I want, but I do still try to be careful and not overdo it. Good luck, I hope you find some answers and success. But, if you have any questions about the daily enema you can pm myself or Tammylayne. It may sound like a strange solution to you, but it really isn't bad at all. Kind of like patients that have a permanent colostomy and irrigate rather than wear a bag. But many do find solutions with time, diet, meds, and physical therapy. Again, good luck.


I'm just starting to try the daily enema idea but the first time was a bit of a struggle. I've got a question, I've heard most people here say it takes about 30 minutes out of there day. Does that mean it takes that long for the enema to go inside of you? Just not sure I'm doing it right. I know that sounds silly but it's harder than it sounds.

It can be awkward at first. The more you do them, the easier it becomes. It easiest to do when your bowel isn't filled with stool. So it may take a few attempts to clean out your bowels. The 30 minutes for me is from set up to clean up. I struggled in the beginning to figure every thing out and to become comfortable. I use a 2 qt bag and fill with water. I administer about 3/4 of the water (takes about 2 minutes) and then sit on the toilet. Another 10-15 minutes to expel, then I administer the remaining amount ( kind of like a final rinse). Another 5-10 minutes on the toilet then I clean up. Takes about 30 minutes. I then do a few things around the house as I may have to go sit on the toilet to expel a little more for the next 30 minutes. I do them daily now because it is easier as the stool doesn't build up. Others will only do when they're having issues or every other day. It just takes time to become comfortable doing it and establishing a routine. Also the more you do, the more water your body is able to take in. If you put daily enemas in the topics you will find many tips from other on this forum. And if you want to private message me I can try to help with any questions you have. There are others here that are also willing to help. It is not easy at first but it does get so much better as you continue.
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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