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The Daily Enema

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The Daily Enema

Postby CRP » Sun Nov 02, 2008 5:00 pm

Over the past year, I have occasionally posted concerning an seldom discussed option for low rectal cancer survivors whose bowel function has been adversely affected by the removal of some or most of their rectum. The program is doctor approved, supported by research, 93% effective when done properly, drug free and takes about ½ hour per day. The program consists of a large plain water enema taken every morning to empty the middle and lower section of the colon of stool. A quiet and empty colon may eliminate all of the issues of urgency, frequency, incontinence and clustering. Follow the link below to see the results of the medical research. http://www.ncbi.nlm.nih.gov/sites/entre ... BAuthor%5D Do your own internet research on keywords such as “bowel management, enema, anorectal” etc.

I am an ultra low (2 cm above anal verge) Stage II rectal cancer survivor who has done a daily enema for the past 11 years. I eat whatever I want and do not have any of the common symptoms of rectum removal as long as I do my daily enema. If I skip the morning routine, I am right back to where I was after my surgery.

At the request of other members of this forum, I wrote a detailed description of the program in a pdf file and have shared it with many members. The response has been overwhelming positive and the program is making a difference in some lives. Drop me a private message with your email address and I will send you the program. Before you start the program you should discuss it with your doctor. Whatever you do, don’t get a colostomy before you give this program a serious try. I think it is better to have your bag hanging in the shower than on your side. Think about it.
CRP
 
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Re: The Daily Enema

Postby CRguy » Sun Nov 02, 2008 7:25 pm

Hi CRP,

could you please repost the entire hotlink you refer to ? It is not working as the text is abbreviated and

" http://www.ncbi.nlm.nih.gov/sites/entre ... BAuthor%5D" just brings up the login page.

Cheers
CRguy
Caregiver who lost a loved one
Now Stage IV A rectal cancer/lung met
7 Year survivor on yearly scans
Caregiver again, whose Dad is now at Peace

...Butt...still believes in the beauty of life
and the POWER...of US !
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Re: The Daily Enema

Postby Gaelen » Sun Nov 02, 2008 7:31 pm

CRP wrote:Over the past year, I have occasionally posted concerning an seldom discussed option for low rectal cancer survivors whose bowel function has been adversely affected by the removal of some or most of their rectum. The program is doctor approved, supported by research, 93% effective when done properly, drug free and takes about ½ hour per day. The program consists of a large plain water enema taken every morning to empty the middle and lower section of the colon of stool. ... Before you start the program you should discuss it with your doctor. Whatever you do, don’t get a colostomy before you give this program a serious try. I think it is better to have your bag hanging in the shower than on your side. Think about it.


Y'know, the daily enema does work for some people. And it's not really 'seldom discussed.' In fact, in the yahoo! CRC support group The Semi-Colon Club, it's come up every 3-4 months for the last two years or so.
It works because it's remarkably similar to the process of irrigating a colostomy.
It is medically approved.
However, as you mention, it's not a permanent solution--once you begin daily enemas, you have to continue them. Stop them, and you are no further ahead in your quest for bowel control.

An ostomy, on the other hand, does offer the patient some options to regain a certain level of bowel control and regularity, even without irrigation.

As an ostomate, I feel somewhat 'belittled' by judgemental statements like "whatever you do, don't get a colostomy before...(fill in the blank)" and "I think it's is better to have your bag hanging in the shower than on your side." Those are your opinions, and you're entitled to them--but the language is a little insensitive to those people who do have ostomies, whether temporary or permanent.

A daily enema is one solution for bowel management after surgery and treatment.
An ostomy is another.
Neither solution is inherently better except from a highly personal perspective. In either solution the patient is still in the position of having to micromanage his/her bowel habits, and is no longer able to eliminate as s/he did before surgery. Whether there's a medical indication that an ostomy provides a more fool-proof long-term solution or enhances survival by removing microscopic cancer in an area where it's difficult to operate, especially for recurrences, remains to be seen.

In any case, judgmental statements which prey on the misinformation, preconceptions and fears people have about ostomies in a forum full of people who HAVE ostomies seem a little out of place. I'm glad that you found in the daily enema a solution that works for you, and I think it's great you're willing to write it up for others--but please, would it be too much to ask for a little sensitivity in your language about ostomies out of respect for those of us who made another choice (or perhaps didn't *have* a choice).

You might want to take a look at this thread to get a sense of how some people are trying to meaningfully discuss some of the fears people have about ostomies. Perhaps you have some perspectives to share in that thread which might make it clear why you have such a negative attitude toward ostomies.
viewtopic.php?f=1&t=5080
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment
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Re: The Daily Enema

Postby kitty,rn » Sun Nov 02, 2008 7:32 pm

My surgeon told me to do daily enemas (Fleet's) every morning for a week a couple of months after my ileostomy reversal and 2 LAR's that left me with 1/3 of my rectum (I don't know how many cm above the anal verge), and because of up to 25 BM's a day and urgency. My surgeon told me at first to use the saline enemas but switched to telling me to use the Fleets enemas for some reason. They did help-- when I could actually get the tip in my rectum-- but each day it was very traumatic to do the enemas due to the contortions I had to do to insert the enema, pain from the insertion, and fluid kind of squirting all over the disposable chux I'd layer under me because I couldn't seem to get the enema inserted correctly. I ended up sort of freaking out and tearful half the time. The procedure involved me lying on the floor in our very narrow bathroom, and having to position my body just inches from the clawfoot tub (our house was built in 1927). Anyway, I sort of have an enema phobia as a result of that week, but when it worked, it did evacuate enough stool that I was able to have a more "normal" day.

I'll read the link you provided and maybe your own enema procedure would be less traumatic than mine....
Stage I rectal cancer 2/07, age 51, found during colonoscopy
Laparoscopic LAR 4/07
Rectovag fistula caused by anastamosis staple; loop ileostomy 5/07
Flap repair of fistula 7/07; Failed 8/07
Open LAR for takedown of fistula 1/08
Ileostomy reversal 2/08
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Re: The Daily Enema

Postby CRP » Sun Nov 02, 2008 10:39 pm

Gaelen,

Your comments hit home. I cannot image the how difficult it must be for anyone to have to make the decision to have a colostomy. There are hundreds of thousands of survivors who are alive and living satisfied lives with a colostomy. The daily enema, like a colostomy is indeed a constant reminder of having survived rectal cancer. In no way did I intend on belittling an ostomate for their medical choice is indeed appropriate in most cases.

The daily enema should only be considered for those who are suffering the consequences of the rectal cancer treatment and are looking for an alternative to the daily struggle to try to establish a bit of artificial control over their new bowel habits. It may not be an appropriate solution for many rectal cancer survivors for a variety of reasons.

The entire link to the PubMed research abstract is “http://www.ncbi.nlm.nih.gov/pubmed/9473119”
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Re: The Daily Enema

Postby NWgirl » Tue Nov 04, 2008 9:59 am

Just for a different perspective, I've had an ileostomy for almost a year now. So long as my bag fits (and 99% of the time it does), the maintenance of having an ostomy is pretty low. I change the bag every 4th day before I shower - this takes 5 minutes max - every 4 days. When I empty the bag it's usually after I eat and takes less than a minute at a time - far less than if I was pooping out the other end, although I'm likely emptying it more frequently.

And that's the extent of my maintenance. I can eat just about any food I want, although I'm very careful to chew food thoroughly and drink lots of water. Honestly, the thought of doing an enema 30 minutes a day every day (for me) would be far worse than have to deal with my ileostomy.

I'm having my ileo reversed tomorrow but my doctor and I both agree that if my quality of life with the reversal doesn't work out, I will go to a permanent colostomy. And I'm okay with that. Since I have no rectum left, I do have concerns, but I'm going to give it a try. It's nice to know there are different options based on what your comfort level is for the different situations. If you've never had an ostomy before, the thought of it can be pretty frightening. I fell into that category at first, but I assure you, my ostomy has been a blessing and I have grown very comfortable with it.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model
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Re: The Daily Enema

Postby gofisch » Tue Nov 04, 2008 10:35 am

Ditto what Belle said.

I'm hoping I can pull this off without a colostomy (no date yet for my take down, good luck tomorrow, Belle!) but now that I think about it, how on earth I would find 1/2 hour for an enema when I have 3 kids... I would certainly give it a try, though.
Frances
47, Mom
Rectal tumor (stage III) 1/31/08
6 weeks radiation/5Fu
LAR w/ loop ileo May/08
Folfox 7/08-1/09
Done with chemo 1/2/09!!!
Reversal 10/8/09, ileus, blockage, resection, home after 30 days!
4 years NED!
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Re: The Daily Enema

Postby post-ileo-nj » Sun Dec 28, 2008 3:55 pm

I would like to comment about the daily enema. I was diagnosed with very low rectal cancer, stage 1 four years ago. I had my rectum removed. I had no radiation or chemo and had an ileostomy for 5 months after surgery. Once I was reversed, I had the usual symtroms, frequency, urgency, clustering, all of it. My doctor suggested the daily enema and it was a wonderful thing to regain some control again. I did this for about two years, and then I tried to stop. It was better, but not fixed. I now will go for three days or so until the discomfort gets to be too much, then i will do an enema. Sometimes, depending on what I eat, or how much, I will go naturally, but not as often as I feel the need to do the enema. My job does not allow me free access to a bathroom, I am a teacher, so clustering is not an option for me. I will say that a daily enema does not give my colon time to do its job and absorb liquid so daily enemas cause more problems than they fix. I can only speak for myself here, obviously, but if you are recently reversed and are experiencing the usual problems, I would try the daily enema, and then experiment with the time between them. My doctor still believes that my colon will recover and do the job, and I am starting to believe it too, but it takes time. I remember a surgical nurse telling me "the guts don't like to be touched" and it is true. There does not seem to be any quick fixes short of ileo or colostomies, which I can understand being a viable option because when I was first reversed, there was a month or two when I wanted it back for the convenience and ease of care, but if you can deal with the whole idea of an enema, I think that some people will regain some degree of "normal" function whatever that means to you. I hope that this helps someone, because I know how hard the first year or two is.
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Re: The Daily Enema

Postby CRP » Mon Dec 29, 2008 11:35 pm

As your doctor suggested, a daily enema is an option that may help you through the transition between the removal of your rectum and regaining of some bowel function normalcy. But, as you have discovered, your bowel functions will never be the same as before the surgery. The rectum is an organ that has a real purpose. It temporally holds stool until you can empty it into a toilet at a convenient time. Without a rectum you will always experience frequency problems, urgency and clustering. You will never re-grow your rectum. By carefully watching your diet and taking drugs that either delay or accelerate the movement of stool through the colon you may mitigate the symptoms, but they will never go away for the rest of your life. It is simply the long term price that you must pay for the surgical treatment that has removed the cancerous growth that has saved your life. Medical research shows that the more of your rectum is removed, the more your bowel functions will be affected. In addition, if you had radiation treatment, you have double trouble.

The success of the daily enema program has been proven by research. Follow the web link. http://www.ncbi.nlm.nih.gov/pubmed/9473119 The issue is how to integrate this program into your life. With the right equipment and technique, you can be symptom free for the rest of your life. It takes about ½ hour per day if it is done while you are taking your morning shower. Almost my entire rectum was removed 11 years ago. I have no bowel function consequences from my surgery other than my daily routine of the shower enemas. This option truly solves the problem if done correctly.
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Re: The Daily Enema

Postby Bue » Sun Aug 14, 2011 5:26 pm

Hello. I'm new, having just joined today and I was hoping to get a copy of your program sent to me via email. The only problem is, the link is not active for contacting you. I assume because I am so new and registered less than five minutes ago. Can you send me the program via this board? Thanks.
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Re: The Daily Enema

Postby sudeha » Tue Jan 17, 2012 10:16 am

I would be so grateful if you could send me a detailed instructions about doing this enema. I seriously need some help and a change, i just can' take much more bowel managing, i am at my wits end!!
Thank you!
sudeha
 
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Re: The Daily Enema

Postby Jachut » Wed Jan 18, 2012 12:48 am

That would be my fear, becoming dependent. As a teacher about to return to work, im nervous, although my bowel routine has settled in the evening. So i am generally free to work all day, but i sacrifice four hours of possible sleep time for it as ten pm till 2 am is my cluster session. Being both by nature and necessity an early to bed early to rise person, i am a walking zombie and it is definitely a factor in my depression issues, and the trouble i am having in my relationship with sugar and caffeine - my body is crying out for energy. I would give my right arm for one big bowel movement a day, i truly dont think many of our surgeons, experienced as they may be, have any true understanding of wgat this is like to live with, but im a little afraid of causing even worse problems such as a lazy colon, dehydration or electrolyte depletion.
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Re: The Daily Enema

Postby sudeha » Wed Jan 18, 2012 2:04 am

Hello
Can anyone please share with me just what causes this clustering? i have it so bad that i am going anywhere from 70-100 times a day with NO exaggeration. i can easily go 20-40 times in 90 minute window. i am awake ALL NIGHT and usually finally slow down around 8:30-10:00am then i sleep. i absolutely do not eat enough for all of this to be coming out of me. I am on all kinds of meds like lomotil, imodium, opium tincture. i am eating a no wheat, dairy or fiber diet, no caffeine or sugar at all. I have been trying to find an answer to understand how this clustering started happening post illiostomy and how to change this. there are way too many of us that suffer from awful bowel challenges i just don't understand how hundreds if not thousands of doctors can do these surgeries and leave the millions of people who suffer. maybe there are people who get better and have quality of life after and regain bowel control but we just don't hear from them on these sites that i have read thus far. I want to understand as well if it is possible at all to regain bowel control if you have had your entire rectum taken out. I am convicted that there is a way, a technology besides having a permanent colostomy. i just choose to not get one. I am only 11 months post illiostomy take down and apparently this is still considered early. but this is a ridiculous way to live everyday. there just must be an answer somewhere.

Thank you for any help you can offer!
rectal tumor 9/10
5 wks chemo/rad
12/10 lymp nodes, 2 ft lrg intest, rectum removed, temp illiostomy
2/11 illiostomy reversed ,scar tissue cut(wrapped around sm bowels & attached bladder)
sm bowel blockage
8 months-80-100 stools a day w/no sleep
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Re: The Daily Enema

Postby Jachut » Wed Jan 18, 2012 2:25 am

Well, dont get me wrong, i think i have very good bowel control fr someone with no rectum - six or seven clustered events within a coupke of hours at a predictable time of day, with full continence. This is at six months out, its definitely pissible. Its still a pain in the butt - pun intended, but very much better than dying of cancer. I definitely have quality of life - i run, go to the gym, work and s ocialise and confidently go pkaces with no bathrooms, like the beach. In return i just have o give up a fair bit of sleep and i seriously wonder if my love life will ever reover, i mean who wants to squeeze in a shag betwee toilet trips?

The clustering hppens because weve lost our holding tank and a colon acts like a colon, it just pushes tuff along. On he whole, it adapts over a year or to but some people never o, it an individual thing.
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Re: The Daily Enema

Postby frances » Wed Jan 18, 2012 2:28 am

Jac,
I know you mentioned a school camp. It just sounds like a recipe for distress. I did not say disaster!
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