On surgeon's advice, going to try the - gulp - daily enema

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tammylayne
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On surgeon's advice, going to try the - gulp - daily enema

Postby tammylayne » Thu Apr 04, 2013 12:12 pm

Frustration has driven me to it...I don't know what else to do. The clustering is taking over my life. Every second day, or third, or every day :shock: I have this clustering that does not end. It lasts for about 3 - 4 hours, drains me mentally and physically and is ruining my quality of life. I have no idea when it is going to happen, no real warning. I find myself having to cancel outings, late for work, stuck at places for hours becasue I can't make the drive home and starting to shut down socially.

My surgeon has suggested a couple of months ago that I consider daily enemas to make things happen every day to hopefully eliminate the clustering/urgency and allow me to spend 30 minutes in the bathroom every day on my own terms. He does not feel they are harmful, and may in fact give me back a better quality of life. He told me to give it a try for a couple of weeks and then come see him if I don't feel things have improved.

Not the direction I saw myself going when I decided to go for the reversal, but I always knew there might be hiccups greater than what I was expecting. I could deal with this better if it was always in the evenings in the privacy of my home, but it is happening at work, and starting to keep me from fulfilling employment obligations - ie I can't go to out of town meeting with co-workers as I am terrified this will happen enroute, or keep us from being able to leave to come back home.

I know I am not the only one that is challenged in this area. I would love some feedback, either on this tread or a PM. I am really struggling here, and the stress of it all is starting to wear me down. Any ideas, thoughts or otherwise would be greatly appreciated.

Note to anyone thinking about having a reversal - please remember everyone is different and don't think that my result will be your result. There are many reversalites here that are very pleased with their results!!!
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."

lunaone
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby lunaone » Thu Apr 04, 2013 2:21 pm

I would definitely give the enemas a try. It doesn't sound like the most appealing thing, but if you can get some control and predictability out of it then it seems worth it. Maybe try it first on your days off to see how the timing goes and how the rest of the day is. I'm not speaking from first-hand experience, but I know how it is to have symptoms at work that you don't especially want to share. I hope your coworkers and boss are understanding and supportive though.
Good luck and best wishes!
Megan
dx 7/10/12, 34yo
resect 8/10/12
2/39 nodes
stage 3a
started 6month Folfox 9/5/12

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raym
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby raym » Thu Apr 04, 2013 2:24 pm

3/11 IIIC +/FOLFOX
4/12 HIPEC
6/12 Chmo/Rad
9/12 XELIRI+Avast/Zltra
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ams5796
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby ams5796 » Thu Apr 04, 2013 2:25 pm

I am VERY interested in this. I have had the same issues that you're describing for the past six years! I swear I think about it constantly. I have very bad evenings/nights followed by bouts of constipation week after week. My bowel issues interfere with most areas in my life. They are the first thing I think about whenever I'm extended an invitation. I've tried everything yet I always feel like I haven't found the magic combination of food, fiber etc.

I have read a few posts on here about the daily enema, but I have been hesitant to try it. Actually, I have tried it a couple of times and felt that I didn't achieve the results I wanted. Either I didn't do enough or I didn't do it correctly.

Has your surgeon given you a plan on how to do it?



Ann
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

sadysue
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby sadysue » Thu Apr 04, 2013 4:00 pm

Tammy.....I think the enemas will help greatly. I don't do them everyday but occasionally they are necessary. If I am in the bathroom 3+ times, one right after the other, out comes the enema and I fix myself. I have no patience for spending hours in the bathroom, like way back when the reversal was brand new to me. I don't use the big enema thingy. I use a 10 ounce bulb and luke warm water. That wakes everything up and the uncomfortable poop leaves me in about ten minutes and I am good to go for the rest of the day. Good luck and I hope this works for you. It's a PIA but better than being in the bathroom for hours at a time.
Mary Ann
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

Jachut
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby Jachut » Thu Apr 04, 2013 4:21 pm

I do it with a bulb syringe that delivers about 500 ml quick and simple.

Maybe because of the amount of water that I use, I still need to wait until I need to go, it doesn't clean me out for days or anything like that but I pretty much hav only one or two bowel movements a day. My problem is not clustering so much as not being able to push stool out on my own, I need to create some irritation and a large volume.

So from that point of view I still run into a lot of trouble if I need to go anywhere other than at home. I will be stuck with not being able to evacuate and all the gas and discomfort that entails. My bowels still rule my life too. I will sometimes do. Bowel prep if I need to.

Also enemas make me feel quite sick for an hour or two.

But it sure beats clustering and inconvenience - give it a try. I was shaking with fear the first time I did it, it felt like such a wrong thing to do, but its really made life manageable

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beccab1
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby beccab1 » Thu Apr 04, 2013 4:30 pm

Eric has been doing a daily enema for months now and it has been really good for him. He does it every night and then for the most part, doesn't have to go again until the next night. We get disposable bags from amazon. He has to visit clients almost daily for his job and it was turning into a nightmare for him because of clustering. Now he doesn't have to worry and it has really made him more confident and happy. He adjusts the time if we have something planned or need to travel.

His surgeon isn't happy about it. I think that he just can't accept that someone would be okay doing a daily enema. He hasn't mentioned any medical reason not to do it. At the end of the day, it is up to Eric and I don't see him stopping any time soon.

At first he had issues with cramping but that has gotten a lot better. He uses purified water and puts that into the bag and then warms it up by soaking the bag in warm water. I know a lot of others prefer morning but we like to sleep as long as possible :D

If you have any questions, please let me know and I'll ask him or have him respond directly.
My husband, Eric, dx @ age 35
Stage IIIb RC (T3N1M0), 3/10
Finished 6 weeks rad/xeloda 5/10
Surgery 7/10, Lap LAR, Colonic J Pouch, Temp. Ileostomy
ypT2N0M0
Xelox (5 rounds)
Takedown 12/13/10
Clear CT - 2011-2015

lauragb
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby lauragb » Thu Apr 04, 2013 5:10 pm

Hi Tammy,
I have had so many problems with clustering from Day 1 of the reversal. My clustering has usually been characterized by difficulty getting the stool out and then just one small piece at a time for several hours. I tried using enemas at around 8 weeks post reversal because I wanted to go on vacation. I did them intermittently for a couple more months until I was fed up with hours of going to the bathroom almost every night. So I started to do them regularly. I found that the small enemas don't work because I still keep going after using them. Now, every day or every other day, I do an enema with a bag, tubing and a pediatric tip. I use about a quart and a half of warm water. It takes a half hour to 45 minutes for the whole process.
It is uncomfortable and I don't feel well while I'm expelling it but the discomfort is short lived. Having the water intake going at a slow speed keeps the cramping down, although I've gotten to the point where this part goes pretty fast.

That said, there is great freedom in doing them. I don't think about the bathroom except in the evening when I do the enema. Last fall, I had psychological issues about having to do them but after my bout with the obstruction, surgery and all that stuff during the winter and reading other folk's issues on here, I realized the enema while not fun isn't the worst thing to have to do and it gives me good quality of life most of the time.

Recently, I've upped my fiber intake and have been going to the bathroom on my own (much to my surprise!), clean-outs with gassy cramps. Honestly, the enema is easier. My surgeon's think it's a good idea to continue.
If you decide to go this route, feel free to PM me if you have questions.

Goodluck,
Laura
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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BrownBagger
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby BrownBagger » Thu Apr 04, 2013 5:14 pm

I think most reversals wind up OK eventually, but when they don't it's heartbreaking. So sorry for your troubles, Tammy. I hope you can find relief with the enema routine.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

lorrainem
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby lorrainem » Thu Apr 04, 2013 6:15 pm

Try everything until you find what works for you, Tammy. There are no two stories alike, some similar, but this is where our "individuality" shines.

Currently I'm monitoring my fiber uptake at the suggestion of GI, granted I'm almost five years out, but it is helping somewhat, especially when paired with 1/2 tab Immodium. Though surgeon says Immodium is fine, GI says stay away...I will use my own judgement on that one.

Good luck, I hope you find the balance!

Lorraine
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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Bev G
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby Bev G » Thu Apr 04, 2013 7:03 pm

Hi Tammylayne,

I just wanted to tell you how sorry I am that you're going through this. I can "hear" the weariness and frustration in your voice. I never had an ostomy, but my surgeon mentioned to me before my resection that I may have ongoing "clustering" because of the location of my tumor (rectosigmoid, but classified as colon). At that point, not only did I not have a clue what she was talking about, but really didn't care. 3+ years later do I ever know what she meant! Although this is not a reversal issue, and I can only imagine what you're going through, my clustering some days keeps me in the bathroom for hours. I spend endless, sort of amusing hours wondering where all of the poop comes from, because I sure don't each much :(

I hope the enema idea will provide the relief and control you need. Poop is just a whole load of cr*p, and you're welcome to quote me, as I often quote you.

Much love,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

tammylayne
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby tammylayne » Fri Apr 05, 2013 12:39 pm

OK...so I tried it last night. Jury is out on the success, but it is only one time, I know I will need to tweak things.

My surgeon said to use a fleet enema to start, and maybe use not the entire bottle. Me...being ...me....used the whole bottle (they are tiny!) and then a good half again of warm tap water. I was able to hold it for a good 10 minutes...maybe a bit more. I did have a large watery gush...but not as much as I was expecting. About 15 minutes after that I went more, about 4 or 5 times over the next 30 minutes, but I never really had that "cleaned out" feeling like after a normal...clean out. I am wondering if I am not using enough water, I read online where people use those big red bags, and they would certainly hold a lot more than the fleet enema bottle does!

All in all it took about an hour, not pleasant, but not the end of the world. I guess there is something to be said for doing over a dozen preps...this seems so simple!!!

As other posters have suggested, I am going to get one of those ball type enema tools. It is interesting that our local big name health product company does not carry any type of enema products, just the Fleet enemas at $5 a pop,...said they stopped carrying the reusable ones years ago because they are not sterile and people were getting sick from them. I could order off the internet but that would take a while to come in, so my dear sweet husband is going to our local SEX SHOP after work because appearantly they sell all different kinds there!!!!!!!!!! WOW!!!!!!! I just don't see the connection, but I guess different strokes for different folks! Plus...I think I lead a sheltered life :shock:

I am thinking of trying this every other day and see how that goes, maybe adding in an extra one for special occasions, and by that I mean when I have to travel somewhere for work, fly, etc...I am trying to keep an open mind about this. Last night wasn't fun, but it was no worse that a normal night, but I got to pick WHEN it happened...ie AFTER Grey' s Anatomy...NOT during!!! That on it's own made it worth it!

Today has been good so far...gassy but I think that is because I upped my fiber and I think my body is fighting me on that one. I will post my progress again in a couple of days in case anyone is interested (Anne) in how things are going.....literally :oops:
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."

ams5796
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby ams5796 » Fri Apr 05, 2013 1:29 pm

Yes, I am interested! Keep the posts coming, Tammylayne!

You inspired me. This morning I did a bulb enema. I went a few times after I did it, but I didn't really feel like I was cleaned out. Then, about five hours later I had a big clean out. I don't know if it was from doing the enema or not. That's one of my problems with doing an enema. I never feel like it works at the time I'm doing it, but maybe it's going to surprise me later at a bad time.

Another problem I have with it is when reading the posts by the hard core daily enema people on here (and elsewhere on the internet) they say the ONLY way to do a daily enema effectively is to use a large volume of water, a 2 quart enema bag is the right way to do it. I did try that and it was really difficult and cumbersome. I ended up having terrible cramps the next day. If I knew that a small enema bulb would do the trick I would be more comfortable with it, but I'm not sure that will be productive. That's why I wondered what your doctor suggested.

Good luck!

Ann
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

SammyJ
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby SammyJ » Fri Apr 05, 2013 4:35 pm

Funny that as soon as i started seriously contemplated this based on the posts over the last few days i have finally strung together 2 good days in a row! I have been taking some really expensive probiotics for about a week now and wondered whether they have kicked in. But please keep the updates coming just in case my luck runs out.

Still laughing about your husband going to the sex shop and wondering if he might come home with a nice enema outfit for you too, maybe some black vinyl number? :oops:
Diagnosed Stage 3A Rectal Cancer March 12, age 39
ULAR and temp ileostomy March 12
Folfox started April 12 , completed Oct 12.
NED 16/10/12
Ileostomy reversal 23 Nov 12....

lauragb
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Re: On surgeon's advice, going to try the - gulp - daily ene

Postby lauragb » Fri Apr 05, 2013 5:37 pm

I hope you get things figured out to your satisfaction. I never did have success with the fleet bottles and I've never tried the bulb enemas. With the smaller amounts of water, I didn't get emptied out and would have gas and need to go to the bathroom later. The fleets also ended up taking the same amount of time as the larger enema that I do now. My set-up does include one of those 2 quart red bags which I fill up to about 1 1/2 quarts. I only did a quart for a while, then graduated to 1 1/2. I know it doesn't sound appealing, I sure didn't want to use this equipment but I have to say I don't have to think about a bathroom at all when I do them regularly. I did one last night, worked all day,have eaten whatever I wanted and no bathroom trips.

I think everyone is different and you will find what works for you. I guess I'm just putting a plug in for the larger enema if the other kinds don't work the way you want. I ordered my stuff online and learned alot from the website, Optimal Health,(everything enema, more than you want to know or imagine) although I don't think I want to do partner enemas which is suggested on the site, heh
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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