The Daily Enema

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Delphi
Posts: 12
Joined: Wed Aug 17, 2011 6:56 am

Re: The Daily Enema

Postby Delphi » Fri Jun 01, 2012 5:28 am

Oh. I egged Sudeha on a bit to try out the enemas mainly because we seemed to have a great deal in common. Seemingly futile surgeries that found no cancer but left us incapacitated. I was encouraged by the posts here and decided to take the plunge when about two years post reversal my bms were still unmanageable. Sudeha you have been such a great partner in adversity and you constantly inspired with the cheerful and practical views you took. Thank you too. Anyway I have documented my own enema journey and just like to invite those who feel the procedure might be useful to send me an email and I'll forward you the document.

Good health to all.
Dx rectal cancer August 2008 (Stage I)
Surgery in August 2008
Recurred April 2009 (Stage IV)?
8 sessions Xeloda and Avastin
Temp ileo
Radiation 25 fractions
Surgery in June 2009 did not find malignancy so staging is questionable
Bowel issues post reversal

sadysue
Posts: 975
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: The Daily Enema

Postby sadysue » Fri Jun 01, 2012 3:46 pm

Belle and Frances....and anybody considering a reversal. I really wish you lots of luck and am hoping for the best of results for you :D I have no rectum - it's completely gone except for the "stump" (the onc's word, which I hate.) Anyway, I had the reversal in March. I don't know if I am extremely lucky but my "new rectum" is doing what it is supposed to do and has been doing well for the last 3+ weeks. I normally have a small BM in the morning, after my breakfast of oatmeal and a cup of tea, and then one large BM at some other time of day, usually early afternoon. I have two Australian Shepherds and two Aussie/Border Collie mix dogs and they get out and hike in the woods with me almost every afternoon. I also do volunteer work at a local zoo and patrol (on foot) for two hours three times a week. I eat whatever I want (had a pint of Blueberry Crumble Hagen Daaz last night :wink: ) and am fine with it. I eat salad and fruits but don't overdo it. I am very happy to be rid of my ostomy, which I had for seven months. That being said, I am also very appreciative that I did have one for a while and it allowed me to heal and get through chemo more easily. Living without a bag is easier for me. Hany in there and good luck with your reversals!
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

sudeha
Posts: 32
Joined: Tue Apr 05, 2011 4:52 am

Re: The Daily Enema

Postby sudeha » Fri Jun 01, 2012 7:14 pm

Wow Sady Sue
you are soooooooooooo lucky you are not having any problems with your illiostomy reversal. Count your blessings! I am at 1 year and 4 months post illiostomy reversal and i am still glued to a toilet and having accidents all the time. the enemas have absolutely helped me to give me some more free time off the toilet. so you have total control without a rectum? I have been looking for someone that is experiencing this and here you are! and you can eat fruit and veggies and even sugar? i cannot eat hardly any fruit or veggies. only banana’s and avocado and maybe an apple every now and then. all the rest give me bad diarrhea. Thanks for sharing!
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

sudeha
Posts: 32
Joined: Tue Apr 05, 2011 4:52 am

Re: The Daily Enema

Postby sudeha » Fri Jun 01, 2012 7:18 pm

The truth is Delphi is that i just cannot accept that this is how life will be so i keep searching for answers and solutions. the cheerfulness is a miracle because the lack of sleep for the last 1 1/2 years and the constant trips to the toilet can drive anyone mad. so lets just call cheerfulness a miracle!
I will NOT quit until i find my answer and solution. My new colorectal doctor i saw yesterday told me i should only be going 1 to maximum 4 times a day by now and having control. My diarrhea is a whole other matter that i am addressing as you know.
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

Jachut
Posts: 1130
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: The Daily Enema

Postby Jachut » Fri Jun 01, 2012 7:32 pm

I started out so well, but a year later not so good. My initial lack of diarrhoea was fantastic, u fortunately th just meant my system was destined to go the opposite way.

My biggest fear with reversal was that i would not be happy (i k ew i was not someone who would cope well withpoor bowel function) but that once i had the rvrsal i wouldnt be able to go back. That is the case. My surgeon, sympathetic to a degree, said further surgery was not an option. I am nowhere willing yo go that route yet, but its the principle of it. He would not accept that i found a bag very easy and could see it as a long term option.

Anway, the problem Ive developed is that my pouch will not empty completely, causing clustering of urges to go, that infuriating feeling of not being done and heaviness and fullness progressing to illness and gas, ive made it seven days without a bowel motion. Im axative dependent but seriously considering an enema now - the laxative process takes about four hours till its safe to leave the house and really needs an overnight sleep to recover.

sudeha
Posts: 32
Joined: Tue Apr 05, 2011 4:52 am

Re: The Daily Enema

Postby sudeha » Fri Jun 01, 2012 7:59 pm

I am confused Jachut

do you have a colostomy bag or not? you said your “pouch" does not empty all the way because of clustering. if you don’t have a colostomy bag, i would highly recommend you doing the enemas. i want to really call them lavages because an enema is where you put as much water in as possible and retain it for a bit of time then empty. but a lavage such as myself and Delphi are doing we sit on the toilet and basically wash out using an enema bag and an attachment but not retaining it. it takes me personally about 5-7 liter bags of water t go though cleaning out.
i wish you all the very best!
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

Jachut
Posts: 1130
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: The Daily Enema

Postby Jachut » Fri Jun 01, 2012 10:46 pm

I mean coloanal pouch. Ileostomy reversed a year ago.

Apparently poor emptying is not an uncommon occurence. But freuency, diarrhoea and continence issues are so prevlent its all you hear about. Its certainly all my surgeon warned me of. The thing i, even though he is not in favour of reoperaying, i is possible but could abolutely flip me over to the opposite problems, so its best to learn to manage what I have.

sudeha
Posts: 32
Joined: Tue Apr 05, 2011 4:52 am

Re: The Daily Enema

Postby sudeha » Sat Jun 02, 2012 1:01 am

so am i correct that you have like a J Pouch. An internal pouch inside your colon that your doctor made? I really have no experience with this. i am so very sorry for your suffering and struggle with this, but i promise you are not alone! Have you searched for a subject on this situation having a j pouch and its complications. i found most all of my help and answers through these online support forums. we all tend to know a lot more than the doctors who have not been through this themselves. Maybe someone will mention to you one thing that you have not heard of before that completely changes things for you.

I pray for answers and solutions for you. keep going and don’t quit!
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

tammylayne
Posts: 2174
Joined: Fri Jul 16, 2010 9:24 am

Re: The Daily Enema

Postby tammylayne » Sat Jun 02, 2012 8:58 am

Sudeha...what exactly is a lavage? What/how do you do it? How long does it take? How long does it last? WHat supplies do you need?

I have probably 4 good days a week, but the other 3 are deadly. Always in the evenings, so I don't leave the house after supper. I will be taking a 9 hour train ride next week, alone, and have to change trains at a major stattion I have never been to. I am terrified that I will get stuck in a line up, have to go to the loo and miss my train. A clean out in the am before I leave might be the perfect thing for me.

Right now, I don't eat anything from the time I get up in the am until dinner, so I have no problems at work. It has been working, I have been back for a month and not had a single issue...no BMs during the day. It helps with my sanity....but by...am I ever hungry by 5, and I KNOW it is not good for me. I am actually gaining weight...si that drives it home that I need to find a different way. I am eating half of what I should be...but gaining. Perhaps your way would be a solution for me....would love to know more.

Thanks
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."

Peloton

Re: The Daily Enema

Postby Peloton » Sat Jun 02, 2012 9:36 am

Tammylayne -

I'm sorry to hear about your struggles. Your situation is similar to mine. I would have a mix of good and bad days throughout the week. Also, I would eat very lightly during the day, eat a bigger meal when I got home for the evening, and plan on spending a good portion of the night in the bathroom. It got to a fairly manageable point for me, but it took a lot of effort.

I had a discussion with my board certified colorectal surgeon and he suggested a daily enema. I was very reluctant at first. Just the thought of it kind of creeped me out. He gave me a great piece of advice that literally changed my mind. In a nutshell, he said "why don't you just try an enema once. If you don't like it, you never have to do it again. But if it works, it could change your life."

Truer words may have been spoken at some point, but they are few and far between. One day after a particularly bad stretch of days, I said the hell with it and bought a disposable enema. I noticed results within two days. I'm at the point now, merely two months later, where I barely think about doing an enema. It's just part of my daily routine. I'm still a little cautious about eating in public (I won't be visiting a Chinese buffet anytime soon), but I pretty much eat what I want during the day - within reason - and have no issues.

As I mentioned in a post above, two days ago I sat next to one of the most well-respected jurists in the nation at a luncheon. I ate a plate of pasta with bread and had coffee for dessert. The thought of having to excuse myself before a judge who was on the short list for the United States Supreme Court a few years ago so I could run to the bathroom never crossed my mind.

I know it's a tough topic and decision. So I will merely reiterate the words my surgeon said. Regardless, I hope you find a solution that works for you.

sadysue
Posts: 975
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: The Daily Enema

Postby sadysue » Sat Jun 02, 2012 11:01 am

One big thing I was doing wrong early after my reversal was eating fiber - but not the right type. The nurses at the hospital told me to start eating fiber about two weeks after the surgery and it would help. I was eating insoluble fiber (whole wheat, whole grain were the only types I knew about) and I was miserable and could not leave the houe. I learned on this website after I posted about my problems, that all fibers are not equal. I should have been eating soluble fiber (oatmeal, white rice.) I also read on an IBS website, that they recommend a soluble fiber be the VERY FIRST thing in the day to hit the tummy. Now I have old fashioned oatmeal (not instant) for breakfast every day as soon as my feet hit the floor in the morning. I still have days when I introduce something new and it doesn't agree with me (like a 5-bean baked bean dish on Memorial Day!) but fortunately those days are not the norm. I also have days that I am in the bathroom 6-10 times for no reason that is apparent to me. But I only have bad days maybe, 1 out of 8. Not bad :D Of course, all this could change for me and a month from now I'll be lamenting that I am back in the bathroom 10-20 times a day. Ya just never know with this disease.

I also did kegel (sp?) exercises to keep my muscles working down there while I had the ostomy. So far, I have been able to hold for quite a while, if necessary. If you can "force" yourself to hold a BM instead of always giving in to the feeling that you need to go, this will help stretch your new rectum and train it to hold more before signaling that it needs to be released. If anybody told me a year ago that I would be comfortable talking about my BM's I would have said they are so full of $$$hit!!!!! ...and here I am! :lol:

Wishing the best of luck and comfort to all us "reversals!"
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

sudeha
Posts: 32
Joined: Tue Apr 05, 2011 4:52 am

Re: The Daily Enema

Postby sudeha » Sat Jun 02, 2012 12:59 pm

[quote="tammylayne"]Sudeha...what exactly is a lavage? What/how do you do it? How long does it take? How long does it last? WHat supplies do you need?

Hi Tammylayne

You can google enema supplies online. there are many choices. I just ordered a 2 quart enema bag with a hose and for me i needed to get a pediatric sized enema tube that was flexible because of so much radiation damage in my anal area. I also got the heavy duty “S” hook. A lavage is the same thing as a regular enema but you are not lying on your left side and retaining the water for as long as possible. Instead, you are sitting on the toilet and inserting the nozzle into your anus. There are many options out there. here is an example of one:
http://www.optimalhealthnetwork.com/2-o ... s/1018.htm

For me, I need to refill my 2 quart bag about 5-7 times to complete my “clean out” I use warm water and i add a little bit of sea salt to keep the water cleaner. I have some plain oil either olive oil or i also like coconut oil which is thinner to lubricate the nozzle to make for easy insertion. it comes with a clamp to put on the tube. I open it all the way and allow the water to flow and I hold it the entire time with one of my hands so it stays in. In between,
I close the clamp all the way and put a wad of toilet paper (with the nozzle still in) into my butt crack (sorry no other way to say that:) and i refill the bag again and again until no more stool is coming out. I have to bear down to make sure i get all the poop out. A lot comes out at first then it begins to taper down usually after the 4th-5th bag. but often more is on its way down my colon so i keep doing a few more bags until i feel sure there is none left. You can opt to buy the 4 quart bag which will hold twice as much water. It’s a lot heavier so you definitely need to get this heavy duty hook. Here this one i got:
http://www.optimalhealthnetwork.com/Ene ... s/1001.htm

Its the Vinyl “S” shaped enema hook. I recommend getting this for both the 2 or 4 quart bag.

I also prefer this clasp: http://www.optimalhealthnetwork.com/Mul ... s/1030.htm
its the blue one: 619 Enema Hose Ramp Clamp

As i shared, I needed to get a pediatric sized tube: http://www.optimalhealthnetwork.com/Lat ... s/1025.htm
(the blue flexible one) but you may be alright with a normal adult sized one

I also bought the top of the line bidet which has been a Godsend for me. Interesting I have not seen this mentioned on any online support forums before and it has changed my life big big time! You install it onto your toilet as your new seat. It has all the bells and whistles. It has different settings to wash you, with different setting of water temperature, a heated seat, a vaginal wash for women, a dryer and even an enema button which has come in GREAT handy when i have taken too many anti diarrhea meds and got overly dried up, i just put this button on and a heavy duty jet stream of water goes into my anus and just cleans me out. I have gone from using 8-9 double rolls of toilet paper per day down to 2 from having this bidet. Its called the
Bio Bidet 1000. spend the extra money to get the best one, it is well worth the money for sure. as much as i am on the toilet it has been an enormous support. Its’s about $499.00 and paid for itself with the amount of money i have save on toilet paper alone. you can buy it here:
http://bidetking.com/product_info_bio-b ... ilter.html

I never ever could go out of my home without having full on accidents all the time sometimes 5-10 accident in just one trip to buy food at the store. i mean it was awful and bad! now if i need to go anywhere i will do 1-3 enemas within a 2 hour period before i leave. I have soooooo much less anxiety now it is a HUGE change for me. as others have said it becomes so routine and not a big deal. If i need to go on a flight, I absolutely do NOT eat anything for hours prior and i will do 2-4 enemas within 2 hours before to make sure i have thoroughly cleaned out. We all have different transit times according to how much large intestine we have had taken out. For example, I have only 2 feet of large intestine left. I know my bowels like clockwork.
I have exactly 8 hours from the time i eat until the time it’s coming out. So i know how to time my meals and leaving my house and all. If i thoroughly clean out before I get on a flight, I know i can eat something right before i go on the plane because that won’t come out for 8 hours. But this is only if I thoroughly clean out before. Whenever i eat, it begins the peristalsis action and i start pooping right away. That is whatever food is from 8 hours prior.

I have an entire other horrible problem going on that I have been trying to heal for a very long time. I had C-Diff in the hospital which causes horrible awful diarrhea. For 1 1/2 years i have been going to the toilet 80-100 times a day. It’s been HELL! I finally got it down to 60-80 times a day which is still hell. But the enemas have drastically changed my reality. Whenever I start a “poop cycle”, I just go straight away and do my “lavages”..”enema washes” That is why i personally need to do so many enemas in a day. But others need to only do one a day and that is all for them. So you need to just know and learn your own personal rhythm, transit time and all, and do yours accordingly. Yes i have tried everything imaginable (trust me) to stop the diarrhea and to get bowel control. I have been unsuccessful thus far but am not giving up at all! I have plan B, C D and F!!!!

Doing these enemas will absolutely get you on this train ride next week. you may want to take some immodium as well to slow your system down to have even more security. My physical therapist also turned me on to these great pads for us bowel incontinent people. They are actually mens incontinent pads by TENA. You can buy them at your local drug store in the adult diaper section. they look like a shape of a bicycle seat and you turn them around backwards so the bigger part is in the back. http://www.tenatwist.com/ and I always no matter what, I put a double or triple layer of “VIVA” brand paper towels on top of the pad because its easier to throw those away if I can keep “my accident” in the paper towels. these are by far the softest best paper towels out there which has become a staple 24 hours a day. I know I am sharing more than you asked but I wish someone told me all these very handy things for myself but i never read these things anywhere. So hopefully this can bring a lot of support for many people.

If you feel awkward doing the enemas- “lavages" at first, DON’T give up, just keep practicing and it will become like brushing your teeth in no time at all! i wish to God i knew about doing these a long time ago. I even bring my whole enema kit with me if i am going to a long class or to a friends house in case a poop cycle starts for me, i just excuse myself and can take like 15 minutes and clean out and be done to feel secure again. I know it take so so much for bowel maintenance. It’s the part of life that just does not seem fair but these things i have mentioned above can truly make life easier.

I hope this explains what you were asking and also helps many more people with the other helpful tips!
Blessings to all of us and may we all find a way to fully recover.
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

rrojas76
Posts: 3
Joined: Tue Jun 14, 2011 7:47 pm
Facebook Username: roger.rojas
Location: Kingsville, Texas

Re: The Daily Enema

Postby rrojas76 » Mon Jun 11, 2012 10:08 pm

Hi Sudeha,

I'm am going on three years NED from Stage III rectal cancer. I was told I would need a colostomy but for some reason the Dr. put me back together. But I have never been normal, if you know what I mean. Accidents are a daily occurence for me, so I have gotten used to them (Immodium and diapers). I am doing well, staying active, working full time in a profession that needs me to be out and about, not stuck inside by the restroom. Recently I have been dealing with the idea of having a colostomy. But I heard about the daily enema, I have just started the process of doing this. Reading your posts today and i was hoping we could get in contact with each other. I just don't feel I'm doing this correctly.
I am still going to visit with my surgeon and discuss things further about the daily enema.

Roger
Dx rectal cancer October 2008 (Stage II/III) III because of one lymph node
Chemo-Radiation from October 2008 to December 2008
Surgery January 2009
Chemo from February 2009 to August 2009
Neuropathy and Incontinence problems
March 2012 Colondar

edman
Posts: 1
Joined: Thu Feb 08, 2018 7:23 pm
Facebook Username: ed malley

Re: The Daily Enema

Postby edman » Thu Feb 08, 2018 8:04 pm

it seems my cancer and location is almost identical to yours im going in for my ileostomy reversal next and have been reading alot of nightmare stories about going to the bathroom 20 times a day,and im thinking how am i going to be able to go back to work, im a pipefitter and work construction jobs the enema option sounds like it would be good for me i tried to pm you but being a brand new member it wouldn't allow me would love to look at the file you've created, im very concerned about my future

ams5796
Posts: 2273
Joined: Fri Feb 06, 2009 10:07 am

Re: The Daily Enema

Postby ams5796 » Fri Feb 09, 2018 4:55 pm

Hi.

I'm not sure who you've emailed but this is a really old thread. You can put enema in the search box on this forum and you will get LOTS of great helpful information. There's also a private group on facebook for LARS sufferers.

I always found this to be a really helpful thread.

viewtopic.php?f=1&t=41071&p=461876&hilit=enema#p461876

Good luck
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met


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