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

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H is for Hawk
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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
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cher
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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

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susie0915
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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.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

ams5796
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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
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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susie0915
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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
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

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susie0915
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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
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

tammylayne
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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."

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susie0915
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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.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

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susie0915
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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
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

ams5796
Posts: 2271
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Fri Aug 18, 2017 12:07 pm

Exactly, Susie! That's the feeling I have most days doing enemas. I wish I could tell you why. I wonder if it has anything to do with what I'm eating. One of the reasons I like doing enemas is so that I do have more freedom with food choices. I don't mean that I take the liberty of eating junk or not eating well. In fact, it's almost the opposite. I use the opportunity to eat more fruit, vegetables, nut etc. When I don't use an enema I'm more careful about everything I eat wondering how my bowels will react. Maybe the folks that have success using enemas are still careful about what they eat taking into consideration what foods will cause gas. Hopefully, they will weigh in.

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

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susie0915
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Location: Michigan

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

Postby susie0915 » Fri Aug 18, 2017 1:14 pm

Ann,

This usually happens only once in awhile for me but wonder why this is. I don't know, maybe it's like before the cancer,
occasionally there are days when bowel movements are out of whack, or you feel more gassy than normal. I will keep monitoring and see if I can attribute it to anything. In general, I feel pretty good most days and still feel that the enemas have given me much more freedom. I haven't missed a golf day yet. I golf every Friday morning in a league and last summer there were many times I had to leave or just didn't go. Don't want to have problems on a golf course. I have noticed that I would get more gassy using the enema bottles vs. the bag. Do you use the bottles or an enema bag?
Susie
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

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

Postby JudeD59 » Fri Aug 18, 2017 2:35 pm

I had a day like that just yesterday. Usually, after I empty, I have about a half hour or so when I feel crampy and like I still have more to get out, but don't. Then it goes away until the next enema. I sometimes have a stitch in my side in the evenings, always right where my ileostomy was, but if I can manage to wriggle a bit of gas out, it goes away. Before I started enemas, that was the spot that bothered me most all day long, so there must just be scarring or adhesions keeping things slightly trapped. Putting a heating pad on it and massaging the area almost always helps.

But yesterday, for no reason I can think of, I felt crampy most of the day and just kind of lousy. I did my routine the same as always, i ate the same things I usually eat, and took the same meds. I didn't have to go at all before my enema today, but just felt off. I try to tell myself that even before the cancer, there were days when my stomach didn't feel great and that's just part of life. I'm not sure we can fix that. And today things are normal again, so who knows?

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

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

Postby JudeD59 » Fri Aug 18, 2017 3:04 pm

ams5796 wrote:Exactly, Susie! That's the feeling I have most days doing enemas. I wish I could tell you why. I wonder if it has anything to do with what I'm eating. One of the reasons I like doing enemas is so that I do have more freedom with food choices. I don't mean that I take the liberty of eating junk or not eating well. In fact, it's almost the opposite. I use the opportunity to eat more fruit, vegetables, nut etc. When I don't use an enema I'm more careful about everything I eat wondering how my bowels will react. Maybe the folks that have success using enemas are still careful about what they eat taking into consideration what foods will cause gas. Hopefully, they will weigh in.

Ann


I know I'm fairly new to this, but since I started doing the enemas, I've tried eating fruit, nuts, and some raw veggies and I've been fine. I didn't eat any of those things before the enemas because I knew they would cause me grief. For instance, before the enema, I could eat literally eight to ten almonds and be okay, but if I ate more, I would be running for the bathroom. Now, I can eat as many as I want and I haven't had any problems. Because I'm eating a more balanced diet and also because I haven't noticed any difference between taking it and not taking it, I've stopped drinking fiber supplements twice a day. Are you still doing fiber supplements? Would that make a difference?

I also drink a lot of Smart Water because water helps eliminate gas and because I worry slightly about not getting enough fluid absorption from the food before I force it out with an enema. I know I personally tend toward dehydration, so I'm being extra cautious. I'm lactose intolerant but I used to put up with it in order to have milk in my coffee. I used 2% milk so I tried 2% Lactaid and hated it. Then I tried the Lactaid whole milk and it was good. Now I use it in my coffee, on my cereal, and in cooking and no one in my family tastes a difference. Could dairy be causing you problems? I know onions and garlic bother some people, but I have few dishes that I cook that don't have either onions or garlic in them, so I haven't eliminated that from my diet. I haven't eliminated desserts from my diet, but oddly, they just don't appeal to me much since I was diagnosed. I make them for company and parties, but don't really have any desire to eat them once they are made. If I am going to have something sweet, I tend to go for blander sweets like angel food cake, pound cake, or sugar cookies, but I don't even want them very often. Another change cancer brought, but I guess this is a good change. I haven't put much of the weight back on since finishing chemo and actually lost a few more pounds on vacation (everyone else was loving the desserts when we ate at restaurants, but I passed on most of them).

We are strong, intelligent, resourceful people and we are going to figure out why you get such pains from the enemas, because it sounds like your life would be so much better using the enemas if only you didn't have the gas pain. Perhaps if you gave us some more clues, like where the pain is, how long you have it, if anything seems to make it better, etc.

Judy, the Nancy Drew of enema problems
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

tammylayne
Posts: 2168
Joined: Fri Jul 16, 2010 9:24 am

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

Postby tammylayne » Fri Aug 18, 2017 6:51 pm

Anne, we have discussed your tummy issues a few times, but i cant remember if you ever said if you tried taking a gas x type pill before you do an enema? The reason i ask is because they work by taking all the little bubbles of gas and forming one big bubble that you eliminate. I wonder if you took one of these about ten minutes or so before doing the enema if that would help? I suffer from gas at times. Not painful, but offensive. I started taking these pills on occasion and they really help. Maybe something to try?
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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