Bowel "Urgency" - help!

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AppleTree
Posts: 131
Joined: Fri Mar 18, 2016 8:16 am

Re: Bowel "Urgency" - help!

Postby AppleTree » Tue Dec 05, 2017 9:58 pm

Right up to Aufust I was taking about 8 Lomotol a day (contemplate-strip). But I was still having watery blow outs that even with depends, ran right down my legs! I was Leary about leaving the house! My oc0ncologist started my on the Sandostatin shot. It hurts at the site for a week...not in an awful way, but you definitely know you had a shot in the buttock muscle! Well, that shot works. Now I take 2 Lomotol in the morning and 1 at night with dinner. I usually have a series of 4-5 movements around 8pm. If it starts to hit the watery/bile stage, I will take 1 more pill. DR tries to get me to take Immodium, but I hate that. Gives me the see saw constipation/runs. If I ever go 1 1/2 day without going 1 take just 1 table spoon milk of magnesia. I worry about any blockages! Last one resulted in surgery. Anyway, just 1 TBS because the dosage on the bottle works like xlax and I do not want that! My sister tried to help me all summer by having me drink Metamucil. That turned me into a playdough factory and everything would just come out like pudding, with no control.

One thing that I do is buy the extra long ladies panty liners. Put those in your underwear or depends. Many times just a little comes out and I can quickly change the liner without changing out everything. Doesn't always work, but they are fairly cheap and often times save you a depends! Xtra long works best.

I had chemo/ radiation and my rectum removed and they cut into the sphincter muscles to get the margins. Now on Folfox. I have hydration on disconnect day and 2 days after.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
March 14 - April 16 - 25 sessions
Tumor shrunk just over 50% Lymph nodes 0/13
Operation to remove rectum with temp Ileo June 17
Reversal July 20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
June 16, MRI shadow in lung
Pet scan - 6.6mm Met in Upper right lobe
July 30 VAT surgery Mass General/Boston
August 24 port installed
August 30 Folfox

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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 Dec 06, 2017 10:58 am

AppleTree wrote:Right up to Aufust I was taking about 8 Lomotol a day (contemplate-strip). But I was still having watery blow outs that even with depends, ran right down my legs! I was Leary about leaving the house! My oc0ncologist started my on the Sandostatin shot. It hurts at the site for a week...not in an awful way, but you definitely know you had a shot in the buttock muscle! Well, that shot works. Now I take 2 Lomotol in the morning and 1 at night with dinner. I usually have a series of 4-5 movements around 8pm. If it starts to hit the watery/bile stage, I will take 1 more pill. DR tries to get me to take Immodium, but I hate that. Gives me the see saw constipation/runs. If I ever go 1 1/2 day without going 1 take just 1 table spoon milk of magnesia. I worry about any blockages! Last one resulted in surgery. Anyway, just 1 TBS because the dosage on the bottle works like xlax and I do not want that! My sister tried to help me all summer by having me drink Metamucil. That turned me into a playdough factory and everything would just come out like pudding, with no control.

One thing that I do is buy the extra long ladies panty liners. Put those in your underwear or depends. Many times just a little comes out and I can quickly change the liner without changing out everything. Doesn't always work, but they are fairly cheap and often times save you a depends! Xtra long works best.

I had chemo/ radiation and my rectum removed and they cut into the sphincter muscles to get the margins. Now on Folfox. I have hydration on disconnect day and 2 days after.

You may do better once you finish chemo. I always had loose stools during chemo. I too do wear panty liners but probably don't need to anymore. After I finished chemo, I had frequent bowel movements not so much diarrhea for almost a year. That is when I went to a bowel control clinic. The dr there suggested tap water enemas or suppositories so I could fully evacuate at one time. I had to do an enema for one of the tests he ordered and felt pretty good all day. So I asked if I could do them every day and he said that was fine. I do every morning takes about 30 minutes and I'm done until the next morning. It is what has worked for me and gives me control of when. Others do fine naturally in time. I tried many things. I also did pelvic floor physical therapy and met with a dietician, which was helpful. I was taking a lot of lomotil and immodium, and it did flip me into constipation once, which was not fun either. Everyone has to figure out what works best for them and will fit into their daily life. Our anatomy has changed so the whole digestive process changes. I just missed a lot of events due to being in bathroom every 20 minutes for a few hours. The daily enema lets me do so many things without stressing. I too had a blockage that resulted in surgery 4 weeks after my resection. Had my ileo reversed at the same time, so it was more difficult during chemo. Good Luck, things will probably get even better after chemo.
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

lauragb
Posts: 897
Joined: Sun Aug 28, 2011 5:25 pm

Re: Bowel "Urgency" - help!

Postby lauragb » Wed Dec 06, 2017 10:01 pm

Hi, I’m just chiming in here as another enema user. I never would have imagined this process would become a part of my daily life but I have now been an almost daily enema user for five years. It gives me the freedom to live my life without bathroom worries, no need for depends and I can eat almost anything. I learned about daily enemas on this site and I am so grateful as I know my quality of life would be poor otherwise. I had bowel clustering and straining for hours every day, really limiting my life. I use warm tap water in a bag and tubing with a clamp. It takes about 30 minutes. Many people do them in the morning but I prefer to do mine in the evening. If I am busy an evening, I might skip a day or do the enema earlier. It took a little time to get used to but now it is just a part of my day. My surgeon was all for it. He said my system would never be normal so the warnings about doing enemas did not apply to me. I know it’s not for everyone but it works for me and I want to be supportive of anyone who wants to give the daily enema a try.
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

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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 » Thu Dec 07, 2017 10:22 am

lauragb wrote:Hi, I’m just chiming in here as another enema user. I never would have imagined this process would become a part of my daily life but I have now been an almost daily enema user for five years. It gives me the freedom to live my life without bathroom worries, no need for depends and I can eat almost anything. I learned about daily enemas on this site and I am so grateful as I know my quality of life would be poor otherwise. I had bowel clustering and straining for hours every day, really limiting my life. I use warm tap water in a bag and tubing with a clamp. It takes about 30 minutes. Many people do them in the morning but I prefer to do mine in the evening. If I am busy an evening, I might skip a day or do the enema earlier. It took a little time to get used to but now it is just a part of my day. My surgeon was all for it. He said my system would never be normal so the warnings about doing enemas did not apply to me. I know it’s not for everyone but it works for me and I want to be supportive of anyone who wants to give the daily enema a try.

Hi Laura,
I wished I would've learned about the enemas earlier. I spent a year trying so many different things. Once I thought I found the answer I would have issues again. My surgeon has no problem with my daily enemas even though I had to go to another hospital to get the recommendation. After I started doing them, I found this site and realized there are many that do them as well. Has been a game changer for me. I have been able to gain some weight back as I'm not afraid to eat, make plans to do things without the caveat "If I'm having a good day", stop taking lomotil or immodium, Metamucil, questran, my bottom feels better, and my mental state is so much better. So hopefully, he will maybe offer the option to patients that have clustering issues. It does take a little time to get comfortable. The first few times were awkward, but it didn't take long institute a routine and become totally comfortable. It's only been about 10 months for me, but I'm glad to see you are still having success after 5 years.
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

Lee
Posts: 5297
Joined: Sun Apr 16, 2006 4:09 pm

Re: Bowel "Urgency" - help!

Postby Lee » Thu Dec 07, 2017 10:57 am

Stardust wrote:
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


I lost 2/3rd of my rectal muscles due to radiation. When I ate, I had about one hour, then for the next 3-4 hrs, I had seconds to get to the bathroom. It got to a point I did not eat at all till I was home for the day.

This is why I have a colostomy bag today. Surgeon was talking about taking muscles from some other part of my body and training them to be like rectal muscles. Goal was 3 BM daily, butt could end up with 20+ BM daily, gee I was already there. For me, getting the bag, gave me my life back.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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

Re: Bowel "Urgency" - help!

Postby susie0915 » Thu Dec 07, 2017 12:39 pm

Lee wrote:
Stardust wrote:
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


I lost 2/3rd of my rectal muscles due to radiation. When I ate, I had about one hour, then for the next 3-4 hrs, I had seconds to get to the bathroom. It got to a point I did not eat at all till I was home for the day.

This is why I have a colostomy bag today. Surgeon was talking about taking muscles from some other part of my body and training them to be like rectal muscles. Goal was 3 BM daily, butt could end up with 20+ BM daily, gee I was already there. For me, getting the bag, gave me my life back.

Lee

It is so freeing I'm sure. We all have to find our answer of what fits into our lifestyle and can deal with.
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

lauragb
Posts: 897
Joined: Sun Aug 28, 2011 5:25 pm

Re: Bowel "Urgency" - help!

Postby lauragb » Thu Dec 07, 2017 7:17 pm

Susie, I am really glad you got things figured out and Lee, as well. I know other people who are very happy with quality of life after going for a permanent colostomy. And for some of us, the enema is effective. We all need to find the best solutions for ourselves.
Before finally accepting the daily enema, I would cluster for an hour while getting ready for work, then I would get home and start up around 4 pm until 9 or 10 pm, even clustering while trying to eat dinner. I would lose count of bathroom trips. And I didn’t eat much during the day either. It took two years for me to get to my pre-cancer weight. That’s not a problem any more!

Anyway, I think it’s great so many people are willing to share stories and ideas to help others who are dealing with the late side effects of treatment.
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16


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