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

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ams5796
Posts: 2254
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Sun Apr 21, 2013 1:44 pm

Wow, Tammylayne, what an inspiring post. I'm so happy for you that the daily enema is working for you. After seven years to finally have your life back is fantastic. I took a few days off, but I did one this morning because I started clustering. I had a bunch of things going on today and I didn't want to be in the bathroom all day. So far, so good. Love the peace of mind it gives me. Not too much pain so far. Do you get any pain afterwards?

Thanks for updating us!


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

lauragb
Posts: 891
Joined: Sun Aug 28, 2011 5:25 pm

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

Postby lauragb » Sun Apr 21, 2013 4:56 pm

Tammylayne, yay! What a great week, so freeing, isn't it? I have been thinking of the enema-ites this weekend. Yesterday, I went out of town, to dinner and a ballet, then sightseeing today with no bathroom worries.
This is the kind of freedom I want for everyone.

I am also willing to take PM questions about enemas if there are people out there not comfortable posting their bowel habits, (unlike some of us).

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

tammylayne
Posts: 2151
Joined: Fri Jul 16, 2010 9:24 am

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

Postby tammylayne » Mon Apr 22, 2013 7:14 am

Thanks enema-ites!!!! I couldn't or wouldn't have done this without you!!!!!

I don't get any pain after. I do get about 15 - 30 minutes of feeling like I still might need to go, but as someone had suggested earlier, I have just learned to trust myself, and not once have I had to sit back down and go again :wink:

I do have a question for the more experienced crowd...it is necessary to "add" anything to my eneam? Do I risk throwing my flora or guts out of whack?

Wishing everyone a great Monday!!
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: On surgeon's advice, going to try the - gulp - daily ene

Postby Peloton » Tue Apr 23, 2013 7:38 am

Great to hear, tammy. I'm glad that the routine appears to be working for you. Learning to trust yourself that you're done going takes time, but gets easier.

lauragb wrote:I do have a question for the more experienced crowd...it is necessary to "add" anything to my eneam? Do I risk throwing my flora or guts out of whack?


I don't add anything to my enema. My surgeon told me that if the water is safe enough to drink, it's safe to use up the other end. My oncologist later clarified - in his refreshingly blunt manner that I've really come to appreciate - "Just use tap water. There's nothing but sh*t up there."

I do't think I've done any harm to my flora or guts. But you can always take a probiotic.

tammylayne
Posts: 2151
Joined: Fri Jul 16, 2010 9:24 am

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

Postby tammylayne » Tue Apr 23, 2013 9:01 am

Minor setback...I hope.

Things have been going pretty good. For 8 days I did the enema and nothing until the next time. Last night...not so good. I am hoping it was what I ate :?

A friend took me out for a birthday celebration to my favorite restaurant and I had a Planters Punch to get ready for my trip to Jamaica tomorrow, a good sized AMAZING cesear salad (all fresh including the raw egg in the GARLIC dressing) followed by a very rich Steak Diane (and I don't eat red meat so this was a treat). About an hour later on the way home I got the oh so familiar pain on the left side signaling 7 - 10 minutes to blast off. Barely made it home in time for the explosion :oops:

I am really hoping this was a fluke....What I ate is nothing like how I normally eat, so I am really hoping it was self inflicted. I was feeling so confident, especially right before flying, so I am feeling a little shakey today. This mornings enema was a little different as well. I did the normal amount...it trickled out, not like normal. Then about 20 minutes later I went again, I normally only have to remain seated for one performance, so it caught me off guard.

Anyone else doing the enema thing have it not always work after an event of abnormal dining?? I would think yes....I just really need some confirmation before I go to the airport...I almost didn't book a trip because of my washroom issues...I really need to believe in myself and that everything will be ok...(Guess that will teach me to eat red meat!! :shock: )
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."

nicola smith
Posts: 1039
Joined: Thu Oct 07, 2010 9:06 am

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

Postby nicola smith » Tue Apr 23, 2013 2:10 pm

Do any of you enema-using posters have a j-pouch? Clustering isn't a problem for me but it's always good to have an option in case things change.

Thanks
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

Peloton

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

Postby Peloton » Tue Apr 23, 2013 2:14 pm

tammylayne wrote:I am really hoping this was a fluke....What I ate is nothing like how I normally eat, so I am really hoping it was self inflicted. I was feeling so confident, especially right before flying, so I am feeling a little shakey today. This mornings enema was a little different as well. I did the normal amount...it trickled out, not like normal. Then about 20 minutes later I went again, I normally only have to remain seated for one performance, so it caught me off guard.


Obviously I can only offer my thoughts, but if I had to bet, my money is on that it was a fluke. I had a similar experience, although not quite to the extent that you had.

After I had been doing the enema routine for a few months, I decided to test the waters and have one of my favorite dishes - lasagna with cooked spinach inside. Heavenly, it was. Until about an hour later when I had my first clustering episode (albeit a relatively minor one) in several weeks.

My conclusion is that, while the enema routine works great and lets me eat almost anything, it's not foolproof. Raw vegetables are still off limits. They just move through my system too quickly. I will have raw fruits, but limit the serving size. Cooked vegetables are generally fine, except for spinach. It's just too potent and moves through my radiated and shortened colon too quickly.

So, if I had to guess, that salad probably stirred things up. I really do miss eating salads, spinach (which I love), and other raw veggies (particularly on sandwiches). But, overall, I'm quite happy with the variety of foods I'm able to eat with no issues.

ams5796
Posts: 2254
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Tue Apr 23, 2013 3:11 pm

Ah Tammylayne,

Jamaica..... and Planter's Punch sounds FANTASTIC! Have a great time! :D

As for the enema, somebody with more expertise than I will come along and share their knowledge. But, my guess, is that you're still not getting cleaned out enough (we're really getting personal here). I don't think it would matter what you're eating if you were totally cleaned out. I'm very interested to see what others will say about this. I say that because I did an enema on Sunday and I used about a quart and a half of water and seemed to clean out a lot. Again I had terrible pain afterwards and into the next day until I had a huge clean out that afternoon without the aid of an enema. I realized that even though I felt so cleaned out on Sunday I must not have been. I don't know what I need to do to get that total clean out.

Again, I might be wrong about your situation, but it seems that the expert Enema-ites travel the globe eating in exotic locations without any trouble. I do hope some will come along and shed some light on this.

Have a great vacay!

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

ams5796
Posts: 2254
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Tue Apr 23, 2013 3:13 pm

I cross posted with Peloton. He is the expert I was referring to, of course. Obviously, I would trust his word on this!
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

lauragb
Posts: 891
Joined: Sun Aug 28, 2011 5:25 pm

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

Postby lauragb » Tue Apr 23, 2013 9:49 pm

Tammylayne,
When I first started doing enemas, I had an episode similar to yours. I did the enema in the morning, went out for a rich seafood lunch, had a blowout about an hour after lunch. That was last August. It has happened to me two other times, once at Thanksgiving when I ate 4 pieces of pumpkin cheesecake in 24 hours and then recently when I ate white bean/sun dried tomato dip for two days and refried beans as well as fruit smoothies for several days. So yeah, food can bring on the unexpected BM.
I am lucky as I am able to eat salads, raw fruits and vegetables everyday. I eat Mexican, Italian, you name it. I didn't have issues with diarrhea or incontinence after my reversal. My issues were more with constipation, urgency and hours of clustering.

Ann,
I hope your issue with pain resolve. I sometimes have a brief episode of pain mid afternoon after lunch but it is short lived. (usually resolves with passing some gas)
Keep us posted on your progress.

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

Jachut
Posts: 1127
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

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

Postby Jachut » Wed Apr 24, 2013 2:34 am

Certain foods cause troublesome clustering diarrhoea for me regardless of the enema: chocolate, sugar in large quantities, more than a glass of wine, any type of fibre supplement (still no BMi, just the sharts). I am also thankful for my lapband as ven with a small stomach, any bigger than normal Mel (bread and butter pet lightly loaded) will cuse me bloating, gas and pain.

tammylayne
Posts: 2151
Joined: Fri Jul 16, 2010 9:24 am

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

Postby tammylayne » Sun Apr 28, 2013 2:33 pm

Back from Jamaica...no issues YEAH!!!!! food was horrible, so I didn't overdue it, but I did eat different things (jerk chicken mmmmmm) with no issues, so that made me very happy. I think what I will do is on nights when I am going out to eat a richer meal, I will do a mini enema before hand. I really don't mind doing then,,,takes about 20 minutes and beats the alternative!!

Hope everyone is doing ok!!
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."

tammylayne
Posts: 2151
Joined: Fri Jul 16, 2010 9:24 am

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

Postby tammylayne » Sat May 04, 2013 9:51 am

Update:

Another successful week. 30 minutes in the morning for my routine and I am good until the next morning. It has been 3 weeks, and I feel good about what I am doing. Had to travel for work this week, in meetings from 8 to 5, and no issues. In the past, this would have been a horribly stressfull situation, worrying that I would have to flee the room at any moment.

I know this might not be for everyone, but if your quality of life is not where you need/want it to be, perhaps this could be a solution. If you had asked me 3 months ago if I would consider a daily enema, I would have said no. I am so glad I listened to the suggestion from my surgeon and people from this board. I was starting to think about reversing my reversal, and while this might be the best solution for some, so far this seems like the best solution for me :wink:

As always...happy to share any and all details either here or through a PM.
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: On surgeon's advice, going to try the - gulp - daily ene

Postby Peloton » Sat May 04, 2013 6:16 pm

Glad it's working out for you, Tammy.

tammylayne wrote:If you had asked me 3 months ago if I would consider a daily enema, I would have said no.


The mental part is the hardest part, I think. It took me a few months to come to terms with it. Now, a year after implementing the routine, it's simply no big deal. It feels entirely normal and natural (I'm just using tap water to assist with the evacuation). Looking back, I laugh about how much I agonized over whether I should resort to a daily enema.

Do you mind sharing the supply logistics when you traveled. Did you bring the supplies (enema, lubricant, cleaning supplies) with you, or did you pick them up at a local pharmacy/drug store when traveling? Any other issues that arose by doing the routine in a hotel as opposed to your own bathroom?

(I have my travel routine down pretty well, but figure others could benefit from it.)

lauragb
Posts: 891
Joined: Sun Aug 28, 2011 5:25 pm

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

Postby lauragb » Sun May 05, 2013 7:20 pm

Great news Tammy! Things are still going well here too. I am so grateful you were so forthcoming with your journey on this thread. This really helped me with the mental part of the whole
thing and I am feeling good about the process and my quality of life. Like Peloton said, you have to get through the mental part. We are all so different in our outcomes to reversals and for
some of us, this does seem to be the best option.

In response to the question about travel, I take my whole set-up, red bag, tubing, lube and nozzle. I do take cleaning supplies in case something needs cleaned up and also soap to clean my supplies.
I have an "S" hook for the bag which I usually put on a towel bar.

Thanks again for sharing!
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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