Daily Enema Therapy for LARS

Please feel free to read, share your thoughts, your stories and connect with others!
scohow66
Posts: 30
Joined: Fri Apr 07, 2017 9:54 am

Daily Enema Therapy for LARS

Postby scohow66 » Wed Jul 11, 2018 7:51 am

Hi all - I am just about a year out from my Ileo reversal (October) and have been suffering with LARS. Not much improvement and am all over the map in terms of symptoms. Pretty much at wits end and Dr. won't address any conversation on approaches until we get to the 1 year mark, but I am seeing him in next few weeks and will discuss this approach. Seems folks have very good results from a daily enema and have read a ton on it both on this site and others. Interested in how to start the process as I assume it takes a few days to get "cleaned out". I see some are able to do in shower and stand during the process vs lying down, etc. Any tips on equipment, positions, when and how best to start out, etc? Also, my Dr. has mentioned Sacral Nerve Stimulation as another option that may provide relief. Its still experimental for post LAR so insurance probably won't cover it, but if anyone has experience please weigh in!

Thanks,

Scott
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

User avatar
susie0915
Posts: 872
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Daily Enema Therapy for LARS

Postby susie0915 » Wed Jul 11, 2018 1:31 pm

I have been doing daily enemas for about 17 months.It has changed my life. I was about 15 months out from reversal. I went to the bowel control clinic at the University of Michigan. The GI there did a couple tests (defocagraphy, anorectal manometry), referred me to a dietician and pelvic floor physical therapist, which were both helpful. After the results of the tests, he recommended daily miralax, or enemas. I had no problem with diarrhea but did have frequent small bowel movements. I chose to do enemas as it gave me control of when and where. I purchased a 2 qt clear enema bag on amazon. I was required to do an 2 cup tap water enema for one of my tests, and even though I was awkward at doing it, I realized I did not have to go to the bathroom for quite a few hours. The first few times were awkward. When you begin there is stool built up in the lower colon so the water will not go in a easily. I kept doing them every day and it became easier to administer the water, and I was able to develop a routine for me. It can be discouraging at first but it really does get easier and now is as routine as brushing my teeth. I lay on a yoga mat with a towel on it, hang the bag from the towel rack on my shower door, and administer the water. I have found that 6 cups is about what I need to clean out my lower bowel. It only takes a couple minutes for the water to flow in, I wait and hold the water as long as possible after (about 3-4 minutes) and then sit on the toilet. The stool and fluid will be released in waves and takes about 20 minutes. The whole process takes about 30 minutes and I am good until the next morning when I do again. I probably could go longer but doing daily makes it easier to administer as stool doesn't build up. Others will do every other day. Practice does allow you to learn to administer as well as learn how long in between, how much water, and what time of day works best. Some prefer evenings, I do in the morning after I workout since I don't work and don't really have to be anywhere early. My advice is to be patient and give yourself time to become proficient and learn what will work for you. When I began, I did watch a couple you tube videos to help me learn. Enemas have really given me my life back. I have been able to gain some weight back that I lost because I am not afraid to eat, my bottom is not sore anymore, and I have stopped taking fiber and Imodium. I will still take a couple lomotil if going out and want peace of mind, although I am sure I do not need it. I never even thought of enemas until the doctor at the bowel control clinic mentioned it, and now I can't believe it is not something that doctors recommend. When I told my surgeon I was doing them he basically said "okay" but really didn't give an opinion. I know others of said their doctors are against them. Good luck with your appointment and I think a year gives you a pretty good idea of where you will be and if enemas would be worth trying.
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

shade
Posts: 157
Joined: Thu Feb 20, 2014 7:08 pm

Re: Daily Enema Therapy for LARS

Postby shade » Sun Jul 15, 2018 8:21 pm

Haven't been here for ages but thought I would weigh in on this important topic. I have been doing daily enemas for years (4?) and have been pleased with the result. My routine evolved over many months of trial and error. Fortunately the ‘errors’ were never catastophic or even embarrassing, merely inconvenient, I do my enema in the evening, never less than an hour (preferably two) before bedtime. The entire ritual takes about 30 minutes to an hour. I use the standard 2 quart bag, about half filled with warm tap water. I do one bag, then use the can for 10 -15 minutes, and follow up with a second bag. That second bag made a big difference for me. It adds the the overall time but improves the outcome. Sometimes I can tell that I need a third bag, if there's a lot that needs to come out. When I travel, the entire kit comes with me, including a tube of lubricant. I could skip a day if necessary. For example if I return from a trip really late, I wait until the next day to do an enema.

There are two problems I still sometimes have. First, every few weeks I have a constipated episode and can't pass easily. Miserable but it eventually comes out. I take 2 doses of benefiber per day and drink plenty of water to minimize the chance of this happening but occasionally it still does. The second problem is sometimes, perhaps an hour after finishing my enema, I have to rush to the toilet to pass some more stool, or some extra liquid. These episodes happen perhaps once every few weeks, and is the most annoying lingering problem because it prevents me from finishing an enema and the heading confidently out the door, or going to bed to sleep. This is why I do my routine a couple of hours before bedtime. From a scheduling standpoint, this means I can't stay out late and then come home, do an enema, and drop right into bed. A couple of times I have passed stool in my sleep, a lousy experience and one I dread. Despite the low risk of this happening I still worry about it.

But overall I really can't complain because my LAR symptoms were ruining my life before, and now I can do pretty much everything I want. I know there some folks that say that there are long term negative consequences of doing daily enemas. But if cancer has taught me anything, it is that, even for the most fortunate among us, life is a more or less temporary proposition anyway. If I have a concern, it is that at some point I may have other health issues that prevent me from getting down on the floor and doing my routine, which does take a bit of physical ability.

Thanks to Tammy, who gave me encouraging advice years ago, and to others who have shared their daily enema experiences. Maybe this practice isn't for everyone but it works well enough for me.

I might add that none of my providers offered any useful guidance on enemas. In fact they were uselessly noncommittal when I asked for a recommendation on whether I should try them. When I mentioned that I was doing them, they basically said that I was on my own. I did not find one provider who wasn't annoyed by / impatient with my LAR complaints. They cured my cancer, and their work was done. Post surgical quality of life was my problem to deal with, apparently.
Stage IV rectal
10/12 Cancerous polyp removed
1/14 Local recurrence
3/14 Chemorad
6/14 LAR and resected liver met, temp ilio
12/14 finished FOLFOX / Avastin
1/15 ilio reversed, LARS
57 y/o dad

shade
Posts: 157
Joined: Thu Feb 20, 2014 7:08 pm

Re: Daily Enema Therapy for LARS

Postby shade » Sun Jul 15, 2018 9:03 pm

I wanted to add a comment about a few LARS interventions I didn't try, or didn't really do much for me. I had LARS for the outset. I was referred to a nice PT, who had seen many ultra low anterior resection cases. She had me do some pelvic floor strengthening exercises, but I can't say PT helped much. My PT said a GOOD outcome for me would be 3 to 5 bowel movements a day. This news practically broke my spirit. The PT put me on FODMAP, which left me cranky, hungry, & skinny. By this time (about 14 mos post reversal) I was considering getting my ilio put back. I went back to my surgeon and he said sure, if that's what you want. He said it would have to be a colostomy, though. I requested different surgeon for followup care, and the new one talked to me about sacral nerve stimulation, but she didn't seem too optimistic about it. She said it might help with control but not clustering. But I did not get the sense that she knew much about it. Last, she suggested something she had no personal experience with - you get a port put in and you use a syringe to flush yourself with warm water every other day. I would have done this, even though it would mean having an appliance installed, but then I started daily enemas, and my LARS has been manageable since.

All this is to say, don't give up hope. Keep trying different things until you find what works for you.
Stage IV rectal
10/12 Cancerous polyp removed
1/14 Local recurrence
3/14 Chemorad
6/14 LAR and resected liver met, temp ilio
12/14 finished FOLFOX / Avastin
1/15 ilio reversed, LARS
57 y/o dad

MissMolly
Posts: 571
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Daily Enema Therapy for LARS

Postby MissMolly » Sun Jul 15, 2018 9:53 pm

shade wrote:Last, she suggested something she had no personal experience with - you get a port put in and you use a syringe to flush yourself with warm water every other day. I would have done this, even though it would mean having an appliance installed, but then I started daily enemas, and my LARS has been manageable since.

All this is to say, don't give up hope. Keep trying different things until you find what works for you.


I think the procedure your surgeon was discussing is called a Malone Appendiceal Colon Enema, also known by the acronym MACE.

A MACE procedure is most often employed in children/adolescents with genetically based slow-to-a-crawl intestinal motility. The MACE procedure involves creation of an opening through the umbilicus/belly button through which warm water is infused via a thin tube to irrigate/flush the downstream segment of large intestine.

MACE is a type of top-down or antegrade enema. The traditional enema approach discussed on this thread (using an overhead bag of water, with water infused through the anus) is a bottom-up or retrograde enema.

For anyone interested in a learning about a MACE, there are two current members of the UOAA forum that share information on managing a MACE as well as its drawbacks and benefits.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

User avatar
susie0915
Posts: 872
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Daily Enema Therapy for LARS

Postby susie0915 » Mon Jul 16, 2018 10:30 am

Rectal irrigation(enemas) is becoming more accepted in the medical field as a treatment for LARS. When I told my oncologist I was doing them she thought it was a great solution and a safe one as well. Our digestive system is never going to be the same. Once losing most of your rectum, the colon can stretch somewhat but cannot stretch enough to replace the rectum. You would be surprised how many patients practice daily enemas for LARS. It has changed my life, physically and mentally.
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

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: Daily Enema Therapy for LARS

Postby tammylayne » Mon Jul 16, 2018 9:05 pm

5 years and going strong. would not give up my daily enema for anything. My life, my sanity...my everything. 30 minutes a day instead of 30 times a day. so grateful it works for me.
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."

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

Re: Daily Enema Therapy for LARS

Postby scohow66 » Mon Jul 23, 2018 3:08 pm

Thanks everyone. I have been doing them for a little over a week. Using about half the 2Q bag with warm tap water and seems to be the right volume. Most of the time it removes LARS for a good 24 hours, but on a few days I have had some minor clustering or early evening needs to use the bathroom. Been doing the enemas in the morning. I find it longer to go in than come out, but allowing a good 45 mins or so to get thru it all. I also am experimenting with nozzles. So far the basic one with the red bag works best...tried a couple others and they seem to cause more leakage, etc. I guess it's the Goldie lox thing...need to find what is just right.
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

jayarrscott
Posts: 1
Joined: Sat Dec 08, 2018 6:04 am
Facebook Username: jayarrscott

Re: Daily Enema Therapy for LARS

Postby jayarrscott » Sat Dec 08, 2018 6:48 am

Hello everyone,

I am from Northeast England, and suffered from LARS for a year after having an ileostomy reversal, at the age of 74.
Like many of you, I felt that my active life was over: I was going to the loo up to 20 times a day, suffered badly from haemorrhoids etc. I couldn't participate in sports, socialise, go to the pub or restaurant - in fact I was pretty much housebound and depressed, so much so that I started investigating suicide!
Like many of you I'd received advice on diet, exercise etc and was taking up to 8 loperamide tablets a day - this lasted for a year.

During web browsing I came across a study entitled "Trans-anal irrigation treatment for LARS" by Dr. Julie Cornish of the University of Wales. I contacted her and the the ensuing discussions with this doctor made me request an enema kit from my local NHS hospital. After a few botched episodes, I managed to establish a successful procedure that I've used successfully over the last 20 months with miraculous success! It takes 40 minutes after getting up then I'm fine for 1 day plus!

Now I'm back to golfing 3 times/week, squash 3 times/week and getting out and about doing everything I want (including trips to France and Spain and a World Cruise - in other words I'm alive again - la vita e bella!

The only downside to this is that it took over a year to start using this approach - the colorectal team in charge of my case seemed unaware that this procedure would be beneficial (I have obviously updated them on this).

Coming across this forum made me realise that there are many more LARS sufferers than I thought, and that the medical establishment is only belatedly starting to realise the benefits of using an enema for this condition. Hopefully the message will spread so that more LARS suffers can have their problems alleviated.

Best wishes to All,

Bob


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: shaunkemplin, Steph20021 and 51 guests