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

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cornerbookshelf
Posts: 3
Joined: Thu Apr 10, 2014 10:45 am

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

Postby cornerbookshelf » Sat Jan 24, 2015 10:49 pm

Laura, Tammy

Three days into the daily enema routine. Hallelujah. Amen. I have my life back. Doing about a quart and a half of water from the red bag. Today I had two BM's afterwards, but it may have been the ice cream I ate for lunch. (I was lactose intolerant even before rectal cancer). Still finding my way through, which foods I can tolerate, which ones I can't. But yesterday I had a double cheeseburger with fries. And No BM. It's like a miracle.

Right now my routine consists of lying on my back on a chux pad to catch any drips. But I'm very intrigued by the mention of the balloon nozzle that's advocated by a poster on another thread concerning daily enemas. It's the guy who came up with the website lowrectalcancer. It sounds like with that inflatable balloon, the catheter is kept in place and we can sit on the toilet and read the morning paper. I've made my purchase online, but not sure if it's the right one. I'm also having problems finding the appropriate inflator.

Just wondering if anyone's experimented with a balloon nozzle.

Again, thanks for this thread. I have my life back. 90% of it. I didn't even realize how depressed I was until the daily enema. And it's only been 3 days.

Filled with gratitude. :)

Ed

tammylayne
Posts: 2157
Joined: Fri Jul 16, 2010 9:24 am

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

Postby tammylayne » Sun Jan 25, 2015 1:08 am

I just have the regular red bag kit. I use about 500 -700 ml of water, I lay on my bed and it takes about 2 - 3 minutes for the water to flow in, while I play on my phone. From there I go to the washroom where I sit on the toilet for about 15 minutes and either read or play on my tablet. Once done, I do my clean up - about another 2 - 3 minutes, I am done in about 30 minutes total...longer if I want to read a little more :roll:

And yes...it can be a GREAT way to get your life back.
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."

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steiconi
Posts: 109
Joined: Thu Jun 26, 2008 10:16 pm

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

Postby steiconi » Sun Jan 25, 2015 5:18 am

After using the red rubber bags for a few years, I switched to the stainless steel hose that screws into the shower plumbing. I use it standing up in the shower.
It works great for me. There's a valve to adjust flow, you don't have to refill, and it doesn't get cold. It even winds up being cheaper because I had to keep replacing the rubber bags when they got moldy. Fleet enemas never had any effect at all for me.

The hose fits a standard hand-held shower head, so I replace the enema nozzle with the innocuous shower head when guest are coming. I haven't been able to find just the enema nozzle (haven't looked too hard), but you could probably pair that with a regular hand held shower unit if you already had one.
I am not my disease.

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 Jan 25, 2015 7:50 pm

I use the red bag, silicon tubing and a pediatric tip. If you have issues holding the water in, one of those inflatable tips might help but just be careful down there since those tissues are sensitive and still healing. It takes me longer to empty my bowels than Tammylayne (I'm a little envious), so I do mine in the evening. Still giving me my freedom, though. :)
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: 2157
Joined: Fri Jul 16, 2010 9:24 am

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

Postby tammylayne » Thu Jan 14, 2016 9:36 pm

I know over the past few years this thread has had a lot of look-sies....just thought I would give an update...

Coming up three years I have been doing the daily enema and I must say my quality of life is a good solid 9 maybe even 10 in this area. It just works for me.

I have had alot of PMs over the last few years and I have shared my story,,,complete and openly with many, many people. Many of these people have gone on to have a greatly improved quality of life. It has helped me to justify why I have gone through this hell called cancer...I have been able to really help others, and that feels good.

So for anyone thinking that MAYBE this is for you...please, please PLEASE talk to me, PM me, give it a try. If it works,,,that is a wonderful thing. If it doesn't work, you can look at other altrnatives.

Wishing everyone a gentle and kind journey...
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
Posts: 2268
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Fri Jan 15, 2016 1:10 pm

I'm taking your recent post as a sign, Tammylayne. As you know I've had mixed results with the daily enema although nobody would want it to work more than me. I'm away now for my daughter's destination wedding in Maui. I was terrified about this trip and how I would manage my bowels. I changed it up from using disposable enema bags and going to the big red enema bag. This seems to have helped a lot. I'm not sure whether it's that I'm using more water, have more control of the speed, or both. Whatever it is I'm grateful that this is helpful getting me through this trip. I made it through the fourteen hour flight. Today's the rehearsal dinner, tomorrow's the wedding. I'm keeping my fingers crossed. Your post came at the perfect time. :D I thank you again for being there to help many of us. I hope all is well
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

tammylayne
Posts: 2157
Joined: Fri Jul 16, 2010 9:24 am

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

Postby tammylayne » Sat Jan 16, 2016 8:09 pm

Anne I was soooooooo happy to read your post!!!!!!!!! I hope today was a beautiful STRESS free...POOP FREE :shock: day!!! You are in paradise for a wedding....I sincerly hope the day was perfect for you.

I know you have struggled with the enema...and maybe "Big Red' as I call it is your answer....I pray it is. Let me know how you made out...I will be thinking about you all weekend!!
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
Posts: 2268
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Sun Jan 17, 2016 2:39 pm

The day was magical. I couldn't imagine a few years ago that I would be at my daughter's wedding with no bathroom worries. Every now and then, I would be in a state of bliss and believe or not I would mutter under my breath " thank you, Tammylayne". Haha. Everything worked out great. I think the big red bag is a game changer for me. Thank you again!
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

tammylayne
Posts: 2157
Joined: Fri Jul 16, 2010 9:24 am

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

Postby tammylayne » Sun Jan 17, 2016 11:14 pm

Ann.....I just read your post twice,,,and cried both times.

I am sooo happy this weekend everything worked out for you...to be able to just enjoy your daughter's special day...amazing.

May this be the beginning of great things,,,stressfree outings,,,, a life where BM simply means Beautiful Memories...

SOOOOOOOOOOOO happy.......
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."

gtryhjuk
Posts: 18
Joined: Wed Mar 26, 2014 10:08 pm

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

Postby gtryhjuk » Thu Jan 21, 2016 7:42 pm

Attachable self cleaning bidet with hot water hookup. Run you about 50-100 bucks, if you have a plumber hook it up (handy people can do it themselves), another 100.

With good pressure you can even give yourself a colonic/enema, hands free.

I think its a huge disservice that any bowel sufferer, for any reason, not be given that advice from the onset.

I cant imagine going through what my wife did without one, and I feel bad for all the comfort she missed out on until I got with the program.
2/13 dw 33 dx mcrc (sigmoid, liver, lungs)
3/13 xelox/folfox (x2)
4/13 folfoxiri (x2)
4/13 cinvd
6/13 colon+liver resection, hai
7/13 5fu,fudr
10/13 liver resection
11/13 - 3/14 5fu,fudr
5/14 -- ongoing xeloda with breaks
7/14 rfa
12/14 LAPM@Coswig Right Lung
3/15 LAPM@Coswig Left Lung
9/15 break from Xeloda
10/15 liver numbers sharply up
4/16 lung nodule ablation

Badass
Posts: 1157
Joined: Sun Jan 15, 2012 11:42 am

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

Postby Badass » Sun Jan 24, 2016 8:55 pm

Tried it today and it really wasn't too bad. Used red kit from Amazon and the hardest part was figuring out how to put it together. The whole think took half an hour or less. I don't have quite the difficulties of some on here, but if this keeps me from thinking about poop for 24 hours, I am sold! Also, I hate immodium-- I am convinced it fries brain cells but sometimes it is the only way I can function, so if I can get off immodium and lomotil, I will be thrilled. They both give me sleepiness and cognitive slowing that I find very upsetting. So, this feels much more "natural." I will see how my week goes with nightly tap water clean-outs. Thanks, Tammy, for this amazing thread!

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

zephyr
Posts: 30
Joined: Thu Aug 18, 2016 7:31 am

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

Postby zephyr » Thu Aug 18, 2016 1:18 pm

Adding my voice to the chorus: thanks for an amazing thread.
Oct-09 Stage I CC
Jun-16 Stage III (T3 N1c)
Jun-16 Surgery
Jul-16 Probable Stage IV with inoperable lung mets
Aug-16 FOLFOX
Jan-17 Dropped Oxi, continuing with 5FU & Avastin

tammylayne
Posts: 2157
Joined: Fri Jul 16, 2010 9:24 am

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

Postby tammylayne » Fri Aug 19, 2016 6:16 pm

Hope this thread helps!!!

I was just thinking this am about how this has just become a part of my life....no different then showering or brushing my teeth. I just get up every morning and do it....then forget about it until tomorrow. The odd time....maybe every other month when I have an "episode" where I go in the evening is not a big deal...makes me think about how other people go more then once a day...and I kind of find it funny as I am soooo used to just going once now every day. Those days of 20 - 30 times a day....every day - are a distant memory.

Please ask if you need clarification on anything...I am always happy to help!!!!
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."

Ron50
Posts: 620
Joined: Fri Feb 10, 2006 7:04 pm

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

Postby Ron50 » Fri Aug 19, 2016 7:38 pm

Hi Tammy,
One of the things that I have found about cancer is that surviving survival is not easy. I am coming up for 19 years cancer free ex stage3c into six nodes. During that time I have suffered constantly from side effects of the cancer and chemo. I suffered acute pancreatitis when a gall stone blocked off my pancreatic duct. I lost my gall bladder and like many suffered bile salt mal absorption , commonly called bile salt diahorreah . Cholestramine was my saviour for years. Then I was diagnosed with protein urea. My protein loss rose to 3grams a day. Three kidney biopsies shed no light on the cause. The biopsies did not relate to any known kidney disease. One of my early nephs decided it was minimal change disease of the kidneys and treated me with 75 mg daily of prednisone for two years with taper. It very nearly resulted in adrenal insufficiency. What it did result in was type two diabetes, osteo-penia , moderate to severe motor sensory peripheral neuropathy of the feet, legs and left hand. My lower back pain was out of control so my gp tried me on a series of meds. Lyrica , Neurontin , endep , norspan and fentanyl patches. None helped and I found the patches too scary to continue. He then put me on Targin ,oxycodone // naloxone. after two years I was on 80/40 mg daily. The opiate induced constipation started from the beginning and never relented. With each 12hrly dose of targin I had two take two dulcolax and two coloxyl. I asked my nephrologist about laxative dependency. He just said that the second highest presctiption numbers he writes are for laxatives. Eventually the oxy became ineffective. I refused to go higher and spent 34 weeks getting off them. Now my protein loss has risen to 7+ grams a day and I have to take cyclosporine twice a day to stay alive. Unfortunately of late I have been suffering from severe oedema. A couple of months back my legs and lungs filled with fluid. I went thru ultrasounds of heart , liver, pancreas and kidneys. There were some problems but none were serious enough to cause the oedema. I was put on a litre a day fluid restrictions and double diuretics. I have been able to control the oedema but the low fluid has resulted in constipation again. It is a vicious cycle that never ends. I am using coloxyl to help keep things moving but I am ever conscious of blocking up and my medical kit always has an adequate supply of dulcolax , coloxyl and microlax enemas . I have found that fibre is not your friend with any type of medication induce constipation and without fluid to shift things I have to be very careful of what I eat. fruit would be ideal but with types two diabetes again I have to be careful. Like I said surviving survival really is not easy there are a lot of costs to staying alive and in the end It comes down to doing whatever you need to do to keep going as unpleasant and onerous as some of those things are. The other thing I have realised is that doctors don't see you every day so they don't know how their advice effects your life. My neph recently asked me to take 5 mg of prednisone daily till further notice. It had the effect he desired , my elevated liver functions went from the red to the black. He suspected mild to moderate auto immune hepatitis, he was right but after six weeks my blood sugars went from 5.8 to over twelve. I stopped taking the prednisone and after six weeks my blood sugars have slowly come down into the sevens. This post is not designed to scare any survivors , none of this may happen to you but if it does you need to be prepared mentally to fight on . Believe me in the past 19 years it would have been very easy to give up, hugs to all ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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chrisca
Posts: 212
Joined: Wed Dec 07, 2011 10:35 pm
Location: Portland, Oregon

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

Postby chrisca » Sat Aug 20, 2016 3:21 am

Some alternatives to try:

Take Metamucil or ground psyllium seed (a bulk product at many nutrition centers.) One teaspoon after breakfast and after dinner helped reduce fragmentation and reduce frequency. It wasn't a cure but provided some improvement.

Ask for a defecography study and also measurement of resting pelvic floor EMG. A physical therapist can do the latter test at an office visit. It's simple and may show something. I'm starting physical therapy soon to learn control to relax the puborectalis muscle, which the doc said could contribute to clustering. The defecography found it.

For me, I do enemas but use them sparingly when needed to make an appointment. They created too much discomfort and electrolyte problems if I did them regularly.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 5 years


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