Did Daily Enema Users consult Doctors?

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Phillypatient
Posts: 20
Joined: Sun Aug 05, 2018 11:28 am

Did Daily Enema Users consult Doctors?

Postby Phillypatient » Wed Oct 31, 2018 5:48 pm

Hi All

I’ve been doing some research on how to deal with my LARS. I had my reversal Dec 2017 and it’s been brutal. I’ve also read some good advice on daily enema usage and wanted to know if users consulted with their doctors first. Also, how long post-reversal did you start using enemas?

Thanks for any and all help
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

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susie0915
Posts: 863
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Did Daily Enema Users consult Doctors?

Postby susie0915 » Thu Nov 01, 2018 8:12 am

I started doing enemas 15 months after reversal. I researched doctors dealing with LARS since all that I tried did not help. I found the bowel control clinic at the University of Michigan. I called and spoke with the nurse and she said I was a perfect candidate to become a patient. The GI I saw ordered some tests (anorectal manometry, defacography), meeting with a dietician, and pelvic floor physical therapy. But based on my symptoms which was frequent formed stools, he suggested either daily miralax or daily enemas so I could fully evacuate at one time. I had to do a warm water enema for one of the tests and noticed I was bathroom free all day. I chose to do enemas as I had control of when I had a bowel movement and felt using miralax would be more unpredictable. The daily enemas take me approx 30 minutes from set up to clean up and provide me 24 hours of no bowel movements until I do again the next day. There is a learning curve as it can be awkward at first
but after some practice it is quite simple. I use a clear 2 qt enema bag I bought on amazon for about $25. I do daily as it makes the process easier and stool does not build up. There are some that do every other day or only when they need to be bathroom free for a period of time. Everyone has a different routine of when they are done during the day (morning or night) and how often. It takes a little time to develop your own. I have been doing enemas everyday for 20 months and have been able to gain some weight back, stop taking meds, not be afraid to eat, and just participate in life.
I think talking to your doctor is a good idea, but know that not all doctors are onboard. I told my surgeon I was doing daily enemas and he really didn't give an opinion, he just seemed pleased 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 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

NHMike
Posts: 1792
Joined: Fri Jul 21, 2017 3:43 am

Re: Did Daily Enema Users consult Doctors?

Postby NHMike » Thu Nov 01, 2018 9:03 am

I asked my Surgeon and she said no. But I'm only three months out. The reversal has been difficult. It is improving very slowly.
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; 9/8: 1.8; 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
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

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susie0915
Posts: 863
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Did Daily Enema Users consult Doctors?

Postby susie0915 » Thu Nov 01, 2018 12:56 pm

NHMike wrote:I asked my Surgeon and she said no. But I'm only three months out. The reversal has been difficult. It is improving very slowly.


It does take time. I tried many different things. Three months may be too soon. I just know some doctors recommend them, others don't seem to think it's a problem, and some do not like them. I have a friend who has had a colostomy for over 30 years and he irrigates his stoma and just wears a cap. Doing enemas is the same concept. My oncologist feels it is a good solution, and my surgeon has examined me every 6 months since doing them and there have been no problems. I like that I don't have to take Imodium or fiber, and generally just feel so much better. I will still take a couple lomotil for peace of mind if going somewhere, but probably really don't need. The dietician and pelvic floor therapy was helpful as well. I think it is becoming a more viable solution for rectal cancer patients. It sounds like you are doing pretty well Mike, I know those bad days can be disheartening.
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

Phillypatient
Posts: 20
Joined: Sun Aug 05, 2018 11:28 am

Re: Did Daily Enema Users consult Doctors?

Postby Phillypatient » Thu Nov 01, 2018 3:57 pm

Thank you so much for the reply Susan. After 10 months out, I think I'm at my wit's end so I'm ready to try things LARS sufferers' employ as opposed to my surgeon who said "oh, you'll just make a couple extra trips to the bathroom...no biggie" Another surgeon also did not recommend enemas, but that may be because there is no procedure for him to do. He recommended a permanent colostomy.
Again, thank you all!
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

Lee
Posts: 5723
Joined: Sun Apr 16, 2006 4:09 pm

Re: Did Daily Enema Users consult Doctors?

Postby Lee » Thu Nov 01, 2018 7:11 pm

Phillypatient wrote: . . . my surgeon who said "oh, you'll just make a couple extra trips to the bathroom...no biggie" , , , !


WOW :shock: just wow :evil:

My surgeon was a bit more honest. 2/3 of my rectal muscles were destroyed due to radiation damage. I was already doing 20+ visits to the bathroom on a daily bases. She talked about taking muscles from some other part of my body (can't remember now, too long ago), and it would take about 2 yrs to "train" these muscles to act like rectal muscles. I could still be living with 20+ visits to the bathroom if it was not successful. Yes I would have taken it if I had to, as I had 2 young kids I needed to raise. Butt she want my husband and I to see an Ostomy nurse. That is when we learned what a colostomy bag was. I walked out of that meeting knowing that is what I wanted. I had my husband's full support. As he put it, you can your life back.

I was about 6 months from that surgery, I was on an all day field trip for my son. One of his teacher's was picking my brain. "you do know I have a colostomy bag" I said to the teacher. "Yes", was her response. She told me about her neighbor who was diagnosed 6 months prior to me. Guess this neighbor is mostly house bound. "You are not. I believe that bag that you have was the best decision". She always wanted me to talk to that neighbor. Never happened.

Daily Enema was not an option that was talked about then, butt if I had not taken the route I did, I'm sure I would be doing them today.

Good luck,

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!

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susie0915
Posts: 863
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Did Daily Enema Users consult Doctors?

Postby susie0915 » Fri Nov 02, 2018 8:08 am

Lee wrote:
Phillypatient wrote: . . . my surgeon who said "oh, you'll just make a couple extra trips to the bathroom...no biggie" , , , !


WOW :shock: just wow :evil:

My surgeon was a bit more honest. 2/3 of my rectal muscles were destroyed due to radiation damage. I was already doing 20+ visits to the bathroom on a daily bases. She talked about taking muscles from some other part of my body (can't remember now, too long ago), and it would take about 2 yrs to "train" these muscles to act like rectal muscles. I could still be living with 20+ visits to the bathroom if it was not successful. Yes I would have taken it if I had to, as I had 2 young kids I needed to raise. Butt she want my husband and I to see an Ostomy nurse. That is when we learned what a colostomy bag was. I walked out of that meeting knowing that is what I wanted. I had my husband's full support. As he put it, you can your life back.

I was about 6 months from that surgery, I was on an all day field trip for my son. One of his teacher's was picking my brain. "you do know I have a colostomy bag" I said to the teacher. "Yes", was her response. She told me about her neighbor who was diagnosed 6 months prior to me. Guess this neighbor is mostly house bound. "You are not. I believe that bag that you have was the best decision". She always wanted me to talk to that neighbor. Never happened.

Daily Enema was not an option that was talked about then, butt if I had not taken the route I did, I'm sure I would be doing them today.

Good luck,

Lee

My surgeon basically said all I needed was benefiber and Imodium. There were the occasional okay days but then I would revert right back to 20 times a day. I never even thought of doing enemas until the GI at the bowel control clinic suggested it, but it made so much sense. I am sure if I would not have given this recommendation a permanent colostomy would've been seriously considered. Daily enemas have not prohibited me, I have done while traveling and can adjust when I do depending on what my schedule entails. During the summer I golf on Friday mornings so I just get up a little earlier and do. Since doing enemas I never missed a golf day, prior to enemas there were many days I didn't go or left the golf course. Another benefit to the enemas is I don't have pain in my bottom thus, not constantly putting creams on my rear end for relief. Like I said it can be awkward at first and not go smoothly, but don't get discouraged. As you keep doing them it becomes so easy.
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

Lee
Posts: 5723
Joined: Sun Apr 16, 2006 4:09 pm

Re: Did Daily Enema Users consult Doctors?

Postby Lee » Fri Nov 02, 2018 7:32 pm

susie0915 wrote:My surgeon basically said all I needed was benefiber and Imodium. . .


My Onc told me to use that too. At that time, neither one of us knew actually why I was having so much problems (2/3 rectal muscles gone or dying). My only solution was not to eat anything until I was home for the day. Many days that was not until 3 or 4 in afternoon. I had to empty my bowels before I could leave the house in the morning. Many days I did not make it to the toilet in time. Yet taking Imodium just drrraaaggged the poop process out. In the morning I could be finished in about 30 mins sometimes less. Imodium dragged the process out to an hour or more.

My worst day, got out of bed rushing to toilet, did not make it. On the floor just before bathroom (that was not uncommon). Sat on toilet for 20 mins. Thought I was clean. Took a shower, felt that rumble, seconds later, pooped in shower. Tried to rinse off as best I could and get to other toilet. Again pooped inside toilet stall, but not in toilet. Spend another 20 min on that toilet. Decided then and there, Imodium was not the solution. Took another shower and then cleaned up all my messes.

Most days, when I finally did eat, I had one hour then sit on toilets for hours or be next to it. When ever I got a grumbling noise, if DH and I were out having an adult dinner, drop every thing and head home. Never left the home without adult diapers on. Kept protective cover for the bed, was willing to throw away pj and sheets.

When I finally saw the surgeon after radiation and she comment on those destroyed muscles, I'm thinking, no wonder, I had the same rectal control of a bird.

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!

sadysue
Posts: 980
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: Did Daily Enema Users consult Doctors?

Postby sadysue » Wed Nov 07, 2018 2:58 pm

Not sure this will help anyone but here goes. I am over six years out from my iliostomy reversal and I still have days that I need to be close to the bathroom. My entire rectum was removed and my muscles down below are not the best anymore. Ten months ago, my gut went crazy out of control and I was having explosive diarrhea and lots of accidents - no changes to my diet, supplements or meds. I had blood tests, fecal tests, etc. My GI doctor gave me a script for Cholestyramine, which is normally used by people to help with high cholesterol BUT it also acts as a bulking agent. It is taken in powder form 1-4 times a day, as needed. I take it once a day every day. I still have bad days but thankful it is much less often than before taking this med. Another little mention is that I aways took my probiotics with my vitamins at breakfast. Last summer, I was channel surfing and stopped to listen to Dr. Oz, who was talking about probiotics. He said that probiotics do nothing if taken with food. You don't want to digest them with your meal - you want them to go straight to your gut. Who knew? Nobody told me. He said to take probiotics one hour before a meal or four hours after a meal. So now I take them as soon as I get up in the morning and give myself an hour for them to work. I hate to jinx myself by saying this but actually feel like this approach is helping 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

NHMike
Posts: 1792
Joined: Fri Jul 21, 2017 3:43 am

Re: Did Daily Enema Users consult Doctors?

Postby NHMike » Wed Nov 07, 2018 3:49 pm

I was just in the bathroom for two hours so I know how this stuff feels. I was in for a few hours early this morning and several trips in-between. I meet with the surgeon next week and need better answers.
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; 9/8: 1.8; 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
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

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susie0915
Posts: 863
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Did Daily Enema Users consult Doctors?

Postby susie0915 » Wed Nov 07, 2018 4:22 pm

I was given cholestyramine during chemotherapy for diarrhea. It worked pretty well. Since doing enemas I don't need anymore. The only thing I take anymore are a couple lomotil just to make sure I'm okay all day. I use for peace of mind, don't really think I need.
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

Phillypatient
Posts: 20
Joined: Sun Aug 05, 2018 11:28 am

Re: Did Daily Enema Users consult Doctors?

Postby Phillypatient » Wed Nov 07, 2018 11:14 pm

The only thing I take anymore are a couple lomotil just to make sure I'm okay all day. I use for peace of mind, don't really think I need.


Did your doc ever mention any long term effects of immodium? My surgeon said it can mess with the natural process of peristalsis and warned against using it.
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

User avatar
susie0915
Posts: 863
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Did Daily Enema Users consult Doctors?

Postby susie0915 » Thu Nov 08, 2018 8:40 am

Phillypatient wrote:
The only thing I take anymore are a couple lomotil just to make sure I'm okay all day. I use for peace of mind, don't really think I need.


Did your doc ever mention any long term effects of immodium? My surgeon said it can mess with the natural process of peristalsis and warned against using it.

No he has never mentioned it to me. Since I do enemas I don't know if it applies. It has not affected the effectiveness of my enemas, and I do find that it does help with any spasms and just kind of calms things down. Before doing enemas, I alternated lomotil and Imodium and never had issues. That was for almost 2 years. I dont know, I figure my system is probably never going to function as it did anyway with the removal of most of my rectum. The only thing I was warned is that it could flip me to constipation.
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

scohow66
Posts: 30
Joined: Fri Apr 07, 2017 9:54 am

Re: Did Daily Enema Users consult Doctors?

Postby scohow66 » Fri Nov 09, 2018 9:12 am

Hi - I have been doing daily enemas since end of July. Took a bit of time to click. Needed to experiment with water volume, positions, timing, etc. but have found a good rhythm now. It has allowed me to plan my day better, eat what I want, and reduce concerns for accidents. I found doing it later in the day/evening to work best for m. Removing time constraints helps so you can take the time you need to get it all done. I do it in the tub too so easy to clean up any spills, and use about 4-6 cups of warm water. I did find I need a "chaser" after the initial enema to do the trick. I use about 2-3 cups for that one and doing it this way gives me at least 24 hrs of relief. I was finding it hard to get a good result just doing the one. Got discouraged but found someone on this site that was sucessful when introducing a chaser enema to get a full clean out. Low and behold that did it for me. All in all I am in and out in about 45 mins.

Good luck!
52 Year old male
Dx with RC 10/2016 (T2N0M0)
Port implanted 11/2016
Rad with 5FU December 2016-January 2016
LAR robotic with temp loop ileo 4/2016
ypT0N0M0 - cPR to chemo/rad
Ileostomy reversal 10/2017
LARS


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