Bowel "Urgency" - help!

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Stardust
Posts: 5
Joined: Tue Jun 23, 2015 9:52 pm

Bowel "Urgency" - help!

Postby Stardust » Tue Oct 31, 2017 9:25 pm

Okay, so. Stage IV rectal cancer w/lung mets, no surgeries, just radiation & chemo, diagnosed ~2.5 years ago.

Here's my problem: I seem to have lost strength entirely in my sphincter muscles. When my upper colon decides it's time to move a "package" along, I have to be able to recognize this fact and get myself to a bathroom within 30 seconds-2 minutes, or else it's coming out no matter what. I can't hold it in at all. When I tried doing an enema one time when I was constipated, the nurse said to try to hold it in for a half hour - impossible, I barely made it 15 seconds.

Has anyone else experienced this? I have a theory that it's because the radiation "cooked" my rectal muscles, but I also see that fecal incontinence can be a result of neuropathy, which I also have.

Are there any treatments for this, that I can ask my doctor about?

--Stardust
Dx Rectal cancer stage IV met to lungs - 6/8/2015
Radiation to shrink the tumor 6/16 - 6/30/2015
Starting chemo FOLFOX 7/10/2015
Ended FOLFOX 11/26/15 due to Oxaliplatin side effects and bad neuropathy.
Restarted chemo w/just Avastin & Xeloda 5/2016. Been on that regimen for 1 1/2 years, still have low CEAs. Let's hope it keeps working!

Aqx99
Posts: 279
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Bowel "Urgency" - help!

Postby Aqx99 » Wed Nov 01, 2017 6:25 am

Find out if you have access to pelvic floor specialists. My nurse navigator is setting me up with the ones at my hospital before my reversal surgery to help get my muscles in shape.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/ temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
1/23/18 Reversal

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Bowel "Urgency" - help!

Postby susie0915 » Wed Nov 01, 2017 7:04 am

I have most of my rectum removed. My problem was more frequent bm's, but didn't have problems holding the stool. I did finally go to a bowel control clinic. The gastro there did a few tests and recommended pelvic floor therapy and meeting with a dietician. I think the pelvic floor therapy really helped. He did also recommend doing enemas or using suppositories to evacuate most that is in my large bowel. I began doing the tap water enemas daily and it does give me freedom for the day until the next morning when I do the enema again. I don't know if you are interested in doing enemas, but it takes about 30 minutes, is on my terms, and allows me to not worry about bathroom issues. Otherwise, I never know when an episode can come over me. It takes a little time to become comfortable, and doing daily makes the process much easier as you do not allow your large bowel accumulate a lot of stool. Since your muscles are weak, this may help you to evacuate when you want and give you freedom the rest of the time.

You may just need to bulk your stool to allow you to hold it easier. This can be done with citrucel or Metamucil. Maybe try that and see if your doctor can order pelvic floor physical therapy to start. I know it can be quite distressing having problems with bowels. If you are interested in enemas you can type daily enemas in the topic and there is a lot of info on the forum. Also, you can private message me if you would like any more information.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

recruiter
Posts: 78
Joined: Thu Feb 11, 2016 12:01 pm
Facebook Username: Bill Wilson

Re: Bowel "Urgency" - help!

Postby recruiter » Wed Nov 01, 2017 2:07 pm

Stardust wrote:Okay, so. Stage IV rectal cancer w/lung mets, no surgeries, just radiation & chemo, diagnosed ~2.5 years ago.

Here's my problem: I seem to have lost strength entirely in my sphincter muscles. When my upper colon decides it's time to move a "package" along, I have to be able to recognize this fact and get myself to a bathroom within 30 seconds-2 minutes, or else it's coming out no matter what. I can't hold it in at all. When I tried doing an enema one time when I was constipated, the nurse said to try to hold it in for a half hour - impossible, I barely made it 15 seconds.

Has anyone else experienced this? I have a theory that it's because the radiation "cooked" my rectal muscles, but I also see that fecal incontinence can be a result of neuropathy, which I also have.

Are there any treatments for this, that I can ask my doctor about?

--Stardust


Your story is exactly similar to mine, down to the Avastin and Xeloda regime that I've been on for a year.

And I have increasing control problems that we're trying to get a handle on. Basically, something comes out any time I pass gas, and in some more severe instances, any time I so much as move. It can be discouraging.

I am still working, so I wear Depends any time I feel at risk of an an accident - which is the vast majority of the time. My cancer is in the spincter a bit, and the Land Down Under took a severe beating from radiation as well.

Right now, I drink a lot of water, try to manage the incontinence as best I can despite the paralyzing fear I have of an accident and turn to an Immodium when I've just had enough of the issues.
DX Stage 4 2/16 with lung mets
4/16 CT, PET show "marked improvement" in size and number of lung mets, rectal tumor.
8/16 "Great report" from scans, lung mets continue to shrink in size and number, CEA 1.6, cancer "in remission" but surgeon believes tumor remains too large.
10/16 Xrays for constipation problems reveal tumor occupies 25 percent of rectal canal: Occupied 80 percent upon diagnosis 2/16
12/16 Back on Avastin; tumor can be removed, but need better margins.

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susie0915
Posts: 551
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Bowel "Urgency" - help!

Postby susie0915 » Wed Nov 01, 2017 3:56 pm

If you look up the MD Anderson bowel control program, you can download. It gives a lot of tips to help with diarrhea and frequent bowel movements after surgery for colorectal cancer. I would add the link I'm not sure how. You may be able to type in topics and may come up as it has been linked on this forum before.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

tammylayne
Posts: 2168
Joined: Fri Jul 16, 2010 9:24 am

Re: Bowel "Urgency" - help!

Postby tammylayne » Wed Nov 01, 2017 10:21 pm

I am not saying other remedies will not work, for many people they have. All I know is I tried many of them, and my quality of life did not improve. I read how some people are able to get to an ok point, but they have eliminated most of the foods they enjoy to get there. I guess I don't understand the reluctance to try the daily enema. The ONLY difference is the 2 minutes for water to go painlessly in...then I go directly to the toilet and just let it come out. Not sure what the stigma is. You sppend less time then some people that are going 3-5 times a day, and you pick the time and place. No surprises.

I understand it will not be for everyone, and not everyone will have amazing results...but you owe it to yourself to try. I say give it 2 weeks to find what works, and if after that you dont feel your quality of life has improved...stop and try something else.

Open to any and all questions. Just trying to make the world better, one enema at a time :D
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

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susie0915
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Re: Bowel "Urgency" - help!

Postby susie0915 » Fri Nov 03, 2017 7:23 am

tammylayne wrote:I am not saying other remedies will not work, for many people they have. All I know is I tried many of them, and my quality of life did not improve. I read how some people are able to get to an ok point, but they have eliminated most of the foods they enjoy to get there. I guess I don't understand the reluctance to try the daily enema. The ONLY difference is the 2 minutes for water to go painlessly in...then I go directly to the toilet and just let it come out. Not sure what the stigma is. You sppend less time then some people that are going 3-5 times a day, and you pick the time and place. No surprises.

I understand it will not be for everyone, and not everyone will have amazing results...but you owe it to yourself to try. I say give it 2 weeks to find what works, and if after that you dont feel your quality of life has improved...stop and try something else.

Open to any and all questions. Just trying to make the world better, one enema at a time :D

I don't understand the stigma either. I tried so many things and even if there was some improvement I could be caught off guard with a day in the restroom endlessly. And there just weren't enough good days. Now everyday is a good day. Once I started doing the daily enema I felt like I have normal life again. I told my survivorship counselor yesterday about it and she thought it was a wonderful idea and was going to recommend to other patients that have problems with frequent bowel movements. I understand many do well with diet, meds, and fiber supplements, but it just became so restrictive for me. I had to always be watching when and what I eat. It may not be for everyone, but everyone needs to know it is an option that takes no time, allows you freedom in what and when you eat, is safe, and relieves the stress of an impending episode.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

MaryannW
Posts: 69
Joined: Thu Jun 04, 2015 7:32 am

Re: Bowel "Urgency" - help!

Postby MaryannW » Sun Nov 05, 2017 12:43 am

I have begun to use enemas in my arsenal thanks to people like tammylane giving me the confidence to try. It takes a lot to think that you need an enema to go to the toilet but in reality it’s quite easy. 20 minutes, a cup and a half of water and I’m good for 1.5 days. I’m still trailing frequency of enemas but it’s the only thing that gives me peace of mind. I ended up with a chronic fissure my function before the enemas was so bad and I’ve tried everything. I ordered a rubber catheter from Canada which gives me no discomfort at all. You can always stop doing enemas anytime and you will get your dysfunctional bowel back but who would want that? Best decision I’ve made so far.
Dx Feb 2015 RC Stage 2a
Pathology stage 1 (post surgery)
5.5 weeks Xelolda + Radiation
ULAR 25.6.2015
6 Rounds mop up Xeloda
Reversal 7 April 2016

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
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Re: Bowel "Urgency" - help!

Postby susie0915 » Sun Nov 05, 2017 9:12 am

MaryannW wrote:I have begun to use enemas in my arsenal thanks to people like tammylane giving me the confidence to try. It takes a lot to think that you need an enema to go to the toilet but in reality it’s quite easy. 20 minutes, a cup and a half of water and I’m good for 1.5 days. I’m still trailing frequency of enemas but it’s the only thing that gives me peace of mind. I ended up with a chronic fissure my function before the enemas was so bad and I’ve tried everything. I ordered a rubber catheter from Canada which gives me no discomfort at all. You can always stop doing enemas anytime and you will get your dysfunctional bowel back but who would want that? Best decision I’ve made so far.


Exactly Maryann. I just don't understand why it isn't recommended more by doctors as an option. It can take a little time to get comfortable doing an enema, but once it becomes a routine it is nothing. My exercise routine is back, I've been able to gain weight back, and overall just feel so much better mentally and physically. I'm glad you have found what works for you. Changed my life after resection.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

tammylayne
Posts: 2168
Joined: Fri Jul 16, 2010 9:24 am

Re: Bowel "Urgency" - help!

Postby tammylayne » Sun Nov 05, 2017 2:14 pm

My surgeon was so happy with my enema results that he started recommending it to his residents and his patients. QofL is so often left out of the equation. We are alive, be grateful. A statement made by someone who has never gone to the washroom 20 to 30 times a day - day after day. Been a hostage to their colon, or lack thereof, afraid to leave their house. Why does it matter what we do, how we go, as long as we feel better...live better.
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
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Re: Bowel "Urgency" - help!

Postby susie0915 » Sun Nov 05, 2017 2:59 pm

tammylayne wrote:My surgeon was so happy with my enema results that he started recommending it to his residents and his patients. QofL is so often left out of the equation. We are alive, be grateful. A statement made by someone who has never gone to the washroom 20 to 30 times a day - day after day. Been a hostage to their colon, or lack thereof, afraid to leave their house. Why does it matter what we do, how we go, as long as we feel better...live better.


Really is the truth. When I told my surgeon how well I was doing he thought it was wonderful, however, it was never an option he suggested. I had to go elsewhere. It's okay, he's happy and when he walked into the examining room in September the first thing he said is "you look good". So maybe he will begin to include as an option for future patients. Maybe if it would've been given to me as an option before actually experiencing frequent visits to the restroom, I may have thought it was strange. But I do remember before I started doing enemas. envying a friend of mine that had an colostomy and irrigated. So maybe you just have to get to that point before you accept it as an option, I don't know. Just glad I included it into my routine.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

MaryannW
Posts: 69
Joined: Thu Jun 04, 2015 7:32 am

Re: Bowel "Urgency" - help!

Postby MaryannW » Mon Nov 06, 2017 8:45 pm

Me too, so glad I got over my reluctance to take the leap. I’m still experimenting with frequency of enemas, but I have two rules. No more sleepless nights and no more clustering. My pattern is I have two or three good days and then a backup which starts the clustering especially during the night. I have developed a chronic fissure as a result, so on the third day I do an enema and it clears everything and I start again. At least that’s the way it’s working at the moment. If I want certainty going out for the day or travelling I do an enema. It’s a 20 minutes procedure and I’m free from the bathroom and the pain of clustering. I love that I have control back. Thankyou for your posts on this forum on enemas.
Dx Feb 2015 RC Stage 2a
Pathology stage 1 (post surgery)
5.5 weeks Xelolda + Radiation
ULAR 25.6.2015
6 Rounds mop up Xeloda
Reversal 7 April 2016

sadysue
Posts: 974
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: Bowel "Urgency" - help!

Postby sadysue » Tue Nov 07, 2017 1:59 pm

This sounds so familiar to me. Most of the time I am constipated but at some point, every several days, the constipation ends abruptly. I start to feel very crampy and then pass hard stool. It gets softer after each trip to the bathroom, usually 4-5 times. The finale is what I call a "blow out." It is very forceful and by the time I am done, I feel like I've lost ten pounds and am exhausted. After this big blow out, I have some residual leakage for a few hours, so wear a pad to be on the safe side. It usually happens once or twice a week. I am unable to take a stool softener because they cause me constant leakage. Good luck to you!
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

sadysue
Posts: 974
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: Bowel "Urgency" - help!

Postby sadysue » Tue Nov 07, 2017 2:40 pm

P.S. about the daily enema. Do you use a disposable enema or one of the big hanging bags. I've tried the large size disposable enema (I think 9 oz) and they help a little. They only get stool close to the anal verge. How do you do it? Lay on the floor in the bathroom or stay close to the bathroom until you are empty? Or do you just do one bag full of water and hold it? After all these years, I am still looking for what works the best for me :-)
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Bowel "Urgency" - help!

Postby susie0915 » Tue Dec 05, 2017 9:39 am

sadysue wrote:P.S. about the daily enema. Do you use a disposable enema or one of the big hanging bags. I've tried the large size disposable enema (I think 9 oz) and they help a little. They only get stool close to the anal verge. How do you do it? Lay on the floor in the bathroom or stay close to the bathroom until you are empty? Or do you just do one bag full of water and hold it? After all these years, I am still looking for what works the best for me :-)

I'm sorry nobody responded to this post. I use a 2 quart bag that is clear that I purchased from Amazon. I put down my yoga mat and a towel fairly close to the toilet. I fill the bag with room temp water and hang in from my shower door. I lay on my left side. I insert the tip (I use the smallest tip, it came with three different sizes).I release the clamp and let the water flow. I usually use about 3/4 of the water, and get up and sit on the toilet. In time I have become able to hold it until I sit on the toilet. Most everything comes out in about 10-15 minutes. I then administer the remaining 1/4 of water kind of like a final rinse. This usually expels fairly quickly as it it mostly just fluid. Then I clean up and done. Takes 20-30 minutes. There is the rare time that I don't feel fully evacuated and may need to administer some more. Does not happen very often though. Using the 2 quart bag I think gets stool further up the colon. It does take time for you to get comfortable putting in that much water but it gets easier. Doing every day makes the process much easier as the colon does not have as much stool to block the water flow. I hope this helps.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5


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