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

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H is for Hawk
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Location: eastern Pennsylvania

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

Postby H is for Hawk » Sat Aug 20, 2016 5:22 pm

I was forced on to the daily enema routine for a month now, due to chronic constipation. I finally told my palliative care doctor and he warned me it is not a good practice to to daily enemas, especially for immune impaired cancer patients undergoing chemotherapy. He claims the enema routine can be traumatic and irritate the colon, where small breaks in the colon wall could become infected. There is a possibility of getting a body-wide sepsis infection, which can be fatal.
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
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cher
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Joined: Fri May 05, 2017 2:40 pm
Facebook Username: diane c neville

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

Postby cher » Fri May 05, 2017 6:43 pm

tammylayne wrote: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!!!




Hi tammy
i am very new to this site and not even sure if im doing this right
but i would love to be able to chat wiht you on the enema thing
I have been having so much trouble with all this
I have had a lar and my reversal has done in last year feb
i have been experiencing lots of clustering , incontinence , and just when i
may have a good week and think things a getting better it all goes south ..
can you give me any advice on what one can do
thanks so much
cher

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

Postby Patrickibsc » Thu May 18, 2017 6:34 pm

Enemas definitely worked for me

susie0915
Posts: 28
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter

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

Postby susie0915 » Thu Aug 03, 2017 7:44 am

I have been using daily enema for six months now. It has been great for me. Since most of my rectum is gone, I had
problems with frequent bowel movements and not feeling fully emptied. After trying different things, I went to the Bowel Control Clinic at University of Michigan. It was there the Dr. suggested enemas, which, I never even thought about.
I tried it once and had a wonderful day. It generally only takes a half hour in the morning and I go about my day. Because
of the daily enema, I have control of when, feel good all day. I am not afraid to eat or plan outings. I have also been able
to gain weight that was lost during cancer treatment because I can eat. I told my surgeon about it, and he really didn't
have any opinion. (He is from a different hospital). I'm just surprised it isn't suggested as a solution for patients regularly.
57 yr old mother of 3 adult children
5/15 Diagnosed with stage 2A rectal cancer
6/15 began 5 weeks of radiation/xeloda
9/15 Surgery to remove most of rectum
10/15 Bowel blockage. 3 1/2 weeks in hospital.
Dr. decided to reverse ileostomy since he
had to do surgery to repair blockage. c-diff infection
12/15 6 rounds of xelox
5/16 Clear CT lung scarring/inflammation
4/17 CT watching small 4mm lung nodule thinks is scar tissue
7/17 no change in 4mm lung nodule
Currently NED

ams5796
Posts: 2251
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Sat Aug 05, 2017 10:41 am

That's great that the enema is working so well for you and giving you your life back. I love that the doctor suggested it. The medical community needs to realize that we're struggling and that we need to think beyond fiber supplements.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
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susie0915
Posts: 28
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter

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

Postby susie0915 » Sat Aug 05, 2017 11:12 am

Ann,
Exactly. I tried the MD Anderson bowel management program. I went to the Gastro at Henry Ford Hospital where I was treated.(Was very happy with the cancer treatment). He suggested Citrucel, which I already did and said it just takes time. I was living on immodium and lomotil. I never knew when I would have a bad day which made it hard to plan anything. After going to University of Michigan, they did a couple tests that tested my control and sensation. The Dr. recommended pelvic floor physical therapy, and consulting with a dietician. These were both helpful also, and the fodmap diet helped me learn which foods may give me problems. But at the initial visit enema or suppositories were suggested, and after I started doing them I asked if I could do daily. He had no problem with it and was happy it was helping. After researching it seems there are varying opionions from doctors on this subject. If they understood how stressful it is to feel tied to the bathroom and never knowing when it will happen or what can cause it , more doctors would recommend it for patients that have tried everything else and have given it time. They advocate irrigating stomas, I don't understand why this isn't a standard practice for patients.

Susan
57 yr old mother of 3 adult children
5/15 Diagnosed with stage 2A rectal cancer
6/15 began 5 weeks of radiation/xeloda
9/15 Surgery to remove most of rectum
10/15 Bowel blockage. 3 1/2 weeks in hospital.
Dr. decided to reverse ileostomy since he
had to do surgery to repair blockage. c-diff infection
12/15 6 rounds of xelox
5/16 Clear CT lung scarring/inflammation
4/17 CT watching small 4mm lung nodule thinks is scar tissue
7/17 no change in 4mm lung nodule
Currently NED

susie0915
Posts: 28
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter

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

Postby susie0915 » Sat Aug 12, 2017 7:27 am

I have a question for those doing the daily enema. I've been doing the daily enema for six months. Yesterday I did my enema and an hour later went and played golf felt good. About 8 hrs later at those grocery store i had a significant leakage of fluid. This has never happened to me so long after my enema. I'm wondering if but was residual fluid from the enema or something else. I felt kind of yucky on and off but ate small dinner. I did experience a lot of bad gas until this morning. I was able to exercise and did my morning enema. Seemed to go smoothly although the color was lighter than usual. I would love to hear anyone's thoughts or experjences. Hoping this was just a fluke or maybe a little stomach bug. I've been so much happier doing the daily enema i don't want to encounter any problems
57 yr old mother of 3 adult children
5/15 Diagnosed with stage 2A rectal cancer
6/15 began 5 weeks of radiation/xeloda
9/15 Surgery to remove most of rectum
10/15 Bowel blockage. 3 1/2 weeks in hospital.
Dr. decided to reverse ileostomy since he
had to do surgery to repair blockage. c-diff infection
12/15 6 rounds of xelox
5/16 Clear CT lung scarring/inflammation
4/17 CT watching small 4mm lung nodule thinks is scar tissue
7/17 no change in 4mm lung nodule
Currently NED

tammylayne
Posts: 2150
Joined: Fri Jul 16, 2010 9:24 am

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

Postby tammylayne » Sat Aug 12, 2017 9:12 am

You might want to try less water. I had that issue at the beginning and my surgeon suggested trying less and it worked. I got the same result with half the amount. Good luck.
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."

susie0915
Posts: 28
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter

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

Postby susie0915 » Sat Aug 12, 2017 10:00 am

Thank you Tamny. I did use more water than usual which I've done before with no issues, in my golf days want to get a good clean out. The golf course his no where to be if there's a problem. So it surprised me 8 hrs later, but all in all the daily enema has been wonderful for me. My family cannot believe how much better I am. Just part of my daily routine. I'm so glad you're having a success as well. I use the bag as well, pretty easy.
57 yr old mother of 3 adult children
5/15 Diagnosed with stage 2A rectal cancer
6/15 began 5 weeks of radiation/xeloda
9/15 Surgery to remove most of rectum
10/15 Bowel blockage. 3 1/2 weeks in hospital.
Dr. decided to reverse ileostomy since he
had to do surgery to repair blockage. c-diff infection
12/15 6 rounds of xelox
5/16 Clear CT lung scarring/inflammation
4/17 CT watching small 4mm lung nodule thinks is scar tissue
7/17 no change in 4mm lung nodule
Currently NED

susie0915
Posts: 28
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter

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

Postby susie0915 » Thu Aug 17, 2017 2:34 pm

As I have said I have successfully been using the daily enema for six months. However, I wonder if anyone will occasionally have a day after doing the enema that you just feel crappy. Probably once every couple weeks, I feel a little tired, maybe gassy so I will just stay around the house. Most days I feel fine. I'm wondering if maybe it's the food I have eaten. Would love to hear others experiences.

Susan
57 yr old mother of 3 adult children
5/15 Diagnosed with stage 2A rectal cancer
6/15 began 5 weeks of radiation/xeloda
9/15 Surgery to remove most of rectum
10/15 Bowel blockage. 3 1/2 weeks in hospital.
Dr. decided to reverse ileostomy since he
had to do surgery to repair blockage. c-diff infection
12/15 6 rounds of xelox
5/16 Clear CT lung scarring/inflammation
4/17 CT watching small 4mm lung nodule thinks is scar tissue
7/17 no change in 4mm lung nodule
Currently NED


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