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Can I use a laxative post reversal

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Can I use a laxative post reversal

Postby John72 » Thu May 10, 2012 7:20 pm

So brief history:

Reversal surgery in June 2011.
Multiple infections thereafter including c-diff.
So no use of anything including fiber supplements during that period. Just my diet.
Ended antibiotics in January.

At that point I was having about 12-20 small bowel movements per day. All were solidly formed...no diarrhea whatsoever.

I started on the MD Anderson Bowel management program. This worked nearly immediately in creating better formed and bulkier movements a few times a day. But I still had a lot of small movements as well and it reduced restroom trips down to about 8-12 a day, with the largest in the morning during/after breakfast and during/after lunch.

However, I have never been able to empty all the way. Not with hot liquid, not with prune juice heated. That is supposed to be the last step to the MD Anderson Bowel Management Program, but it just doesn't work for me. In fact, it takes about 20-30 minutes after the hot drink or prune juice to generate a bowl movement. And even then its not every time.

At this point, nearly a year post reversal surgery, its just not acceptable for me to be going this often. It impedes my ability to get to and from work, and its a quality of life issue that should be resolvable.

So two Sunday's ago, I ate something that didn't agree with me at all. My stomach rumbled, I fled to the restroom, and ten minutes later, everything was evacuated. First time I've had diarrhea since my reversal surgery. Not only that, I did not have to go to the restroom at all the entire next day. First time thats happened as well. I was in bliss. The next day, I had to go about 5 times...but thats still a MAJOR improvement...and that was one large movement in the morning, and the other 4 were small amounts.

The next day after that(Wed) things were rougher and I had to go about 8 times. So Wednesday night I decided to use a Ducolax. Emptied out in about 30 minutes on Thursday morning and was on my way with no BM's Thursday, only 2 on Friday, and only 3 on Saturday.

I've used the Ducolax twice since then..Sunday night, and then again tonight...never any more than at least 2 full days in between(ie if I take it on Monday, I won't take it again until Thursday).

The impact on my quality of life is beyond measure. Work is easy. Going out is easy. Eating a meal is easy. But I know laxatives can be bad for you and even addictive. I don't want to cause further damage to myself.

So I guess I have two questions:

1.) Is this something I can keep doing?
2.) Are there alternatives that are better?

I haven't entirely discussed it with my doctor. The reason is that my medical provider(Kaiser) has been deficient in this one area....nutrition, diet, and bowel management....up until now. When I've sought advice, their nutritionists are literally clueless. They make recommendations that are terrible and have caused my system more problems than they've solved. Kaiser has been great on everything else, but not in this regard.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan
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Re: Can I use a laxative post reversal

Postby Surroundedbylove » Thu May 10, 2012 9:03 pm

Hi John,

Unfortunately not - at least on a more regular basis. The reason is that you will develop a "lazy colon" and it could actually stop functioning to move waste along and then there are even worse problems.

I hear your "pain" though - when I had to go on this new drug I've had a couple of times where I've been constipated enough to need a laxative and wow - it is really nice to be completely cleaned out.

Here are my tips to come close:

1. Use Miralax daily - it will soften the stool enough without having a big blow out so that you have a better chance of fully evacuating. I had to experiment with the dosage a little but eventually I figured out what worked nicely for me
2. Figure out if you have any foods that really help things along. For me the magic combination is a salad before dinner with plenty of tomatoes, sautéed kale as a veggie at dinner, brown rice, and then a chocolate dessert. If I'm having a rougher day, I'll have this kind of a dinner and it works just as good as laxatives.
3. Use laxatives and things like Smooth Move Tea (which is just the same - it is a natural laxative but can still cause a lazy colon) very sparingly. You should be able to find some web information about "laxative abuse" and how often you can use them. My new doc said no more than once a month - I don't know if that is because of the drug I'm on or if that is the right amount to prevent laxative abuse and a lazy colon.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown '09
SIL Dx 2014 - Rectal T3
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Re: Can I use a laxative post reversal

Postby jjlist » Thu May 10, 2012 10:01 pm

John,
Miralax is the only thing i would use frequently. per my onc and surgeon.
Supposedley that product does not affect your dependancy on your colon working right.
I am 16 months post reversal. and I deal with constipation issues. until I have a big blow out.
I have tried EVERYTHING. nothing has made a difference into something that can be predictable and manageable.
I have been experimenting with miralax daily as well. And I Stopped Metamucil. I think that was plugging me up. I do not get quite as constipated now. But the frequency is too much. I and I cant hold anything
When I have to go, I need to go. most of the time I can kind of know when the complete blowout is going to happen. I can feel full and bloated, and usually a big dinner meal will start things moving. But it can be up to 2 hours to complete it. I could not be out anywhere during these events. I will say the daily miralx was a move in the right direction. But daily may be too much for me. I am going to try every other day
and maybe on the day in between take a dose of Metamucil.
When I do have planned events, in the evenings, I have to practically not eat for 2 days
and take Imodium’s to slow anything down when I am out
My QOL is not that great right now. I am still hoping for improvements but hope is fading after 16 months.
As for the MD ANDERSON bowel management training. It didn’t work for me. I really think that program doesn’t mean anything to patients with out a rectum and or patients dealing with long term radiation treatments to whats left down there.
Everyonce in a while someone chimes in with regualr enemas. Sure would be blissful not to carry around loads of crap all day in my gut,,,.
oh what i would do for a one and done ,,,,,,
age 56
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown
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Re: Can I use a laxative post reversal

Postby Peloton » Thu May 10, 2012 11:47 pm

Hi John -

I can very much relate. I was having similar problems as you post reversal (diagnosed with stage 3c at 30, temp ileo for 6 months). The only difference was that, for some reason, most of my clustering activity occurred in the middle of the night. I was would have a small cluster in the morning, one after dinner, and then a cluster big sometime after midnight. My theory was that my body relaxed at night and opened the floodgates, so to speak. I would typically have to get up once or twice during the night. I would get maybe one night in a given week where I did not have to get up. Every once in a while I would get two nights in a week.

Things were, for the most part, manageable. But it took a lot of effort. The lack of sleep really affected my quality of life.

I shared my problems with my colorectal surgeon a few months back. He told me that a good number of his patients who had LARs do daily enemas for the exact reason you suggested. People spend some time in the morning, get cleaned out, and go about their day. I was very skeptical at first for a number of reasons, including not being open to starting my day with an enema. Finally, after a string of bad weeks, I finally gave it a shot.

My results have been nothing short of remarkable. I self administer an enema once a day, get cleaned out, and go about my day without worry. I can eat whatever I want (within reason, greasy chinese food, for example, still causes issues), stay out all day and into the night, and don't think about my new plumbing. There has been some fine tuning, a few mishaps along the way while getting comfortable with administering the enema, and some patience while getting into a good routine. But in the six weeks since I started doing a daily enema, I have had three days/nights total where I could not make it 24 hours between bowel movements. Each of those days was attributable to me being careless with my diet (sometimes I can't resist the local Szechuan chinese restaurant down the street).

I highly recommend that you at least discuss this option with your surgeon or oncologist. I have learned an incredible amount from people on this board, and I am eternally grateful for that. With that said, no one here is qualified to tell you what is and is not medically acceptable. I raised with my surgeon concerns about developing a lazy colon. He told me that doing a daily enema is the same as someone with an ostomy irrigating. You're flushing the colon out so as to create more storage space for waste. His near verbatim quote to me was "if someone with an ostomy shouldn't worry about a lazy colon, neither should you." (That's not to say there aren't medical concerns, which is all the more reason to speak with your surgeon.)

I hope this helps. I'm amazed at how much my life has improved by my new routine, and regardless of what you do, I hope you find a routine that works well.
Peloton
 

Re: Can I use a laxative post reversal

Postby Jachut » Fri May 11, 2012 1:46 am

Im jealous of tjose of you that have the blowouts! Im at my wits end too t ten months post reversal. In the almost six months since ive seen my surgon Ive gotten to th point of not really being able to go without a laxative. My pettern is either multiple small poops (marble sized) which are nontheless fairly soft, but enduring bloating, heaviness and an unrelenting urge to go that i cant relieve, or i stop up completly until I give in nd take lactulose for a big cleanout. Six days is the longest ive lasted. Im getting heartburn and reflux and having trouble emptying my bladder at times.

Nothing works for me. Metamucil bungs me up worse, benefibre has no effect untill i take so much that I shart all day, no big clean out. High fibre dit, prune juice, water, running, nothing.

The only day i dont feel lethargic and mildly sick is the next day after a l actulose clean out. Smller maintenance doses dont w ork, i need to take a lot nd really clean out. Going out or mothers day tomorrow night, a really nice dinner tht i wnt to enjoy so guess what im doing tonight? Its sooooo not good and i know it - and i know my surgon will hit the roof hen i see him in two week.

I dont know the answer. Returning to an ileostomy i sounding pretty good though.

I think not having a rectum needs a special bowel management program all of its own, its an entirely different scenario.
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Re: Can I use a laxative post reversal

Postby IceGal » Fri May 11, 2012 8:42 am

I've attached an article that I came across which may be useful for you as a discussion point with your docs. It basically states that the concerns about laxative addiction are anecdotal only and are not science based, so your use of one every few days should not be an issue.

Just something to think about!

Hope everyone finds ways to find a good quality of life with their new normal.

http://www.sciencebasedmedicine.org/ind ... and-facts/
dx 09/21/11 CC Stage II T4b N0 Mx
Right hemicolectomy 09/22/11
Xelox 8 cycles begun 11/22/11
Oxali dropped after 2 cycles due to side-effects; Xeloda only
Chemo done 05/07/12
Next is hysterectomy to see what the scanned "things" really are
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Re: Can I use a laxative post reversal

Postby John72 » Fri May 11, 2012 9:41 am

Thank you for the advice so far. I'll look into Miralax and enemas.

It just seems like there should be some sort of reasonable resolution.

Food hasn't really been an issue for me other than dairy, which I eliminated from my diet. Exercise isn't an issue...I walk 3 miles a day at minimum. Just seems like my body won't cooperate
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan
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Re: Can I use a laxative post reversal

Postby Cj51 » Fri May 11, 2012 10:00 am

I'm watching this thread with interest. I am 6 months post takedown and MD Anderson hasn't done much for me, either. I know it's early for me yet, but I long for some sort of predictability and control. So many seem to swear by it, but while it seemed to help a little at first, as I heal and get further out, that faded and now it doesn't do anything for me. My surgeon told me that I could use Citrucel and Miralax, as much as I needed with no ill effect. Two teaspoons of Citrucel at night with plenty of water at least keeps things moving, which is better than when they're not. Fiber helps to a point--too much and it makes for constant trips to the bathroom (Hence two teaspoons of Citrucel--more and I'm in the bathroom constantly the next day). Miralax does it's job a bit too well--one teaspoon at night will cause a multiple day clean out and seems to speed up transit time for everything I eat for days. It seems to be really strong for me. I have a scope next week with a Miralax prep and I'm a little scared about that whole bottle! :shock: However--I'm hoping to 'reset' and start over next week afterwards and see if I can figure something out that works better.

Will be watching to see what others have done. Maybe those of us with very little to no rectum left can come up with something that can at least serve as a starting point for control. I know we're all different, but shouldn't there be at least something that can help us get our lives back? What a blessing that would be for all of us! I'm not totally opposed to enemas, but if it then locks you into having to do one daily for the rest of your life, I'd rather try something else first and use that as a last resort.

Cj
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
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Re: Can I use a laxative post reversal

Postby nicola smith » Fri May 11, 2012 10:42 am

I've seen some literature that says there is a possible association between laxative use and lazy bowel/colonic inertia so I don't take them.

But if I've had a late dinner, I'll sometimes use the enema function of my bio-bidet for a gentle clear out before going to bed.

FWIW, this thread has postings from people who have been using enemas for a long time: http://www.zity.biz/index.php?mx=forum;ox=display;topic=14757
UC history
11/09: Dx
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
03/10,11,12&13; 06/14: CT NED
04/12: PET/CT NED
03/13: port out
CEA ~3 mnths: 2.9@dx,.9,1.7,1.5,1.1,1.3,.8,.9,.9,1,.9,.8,.8, 1.1,1,1.1,1.3,1.2
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Re: Can I use a laxative post reversal

Postby Jachut » Fri May 11, 2012 9:01 pm

Im not opposed to enmas either, but when? I dont have time in the mornings and dont want to be housebound at night. As it is, Lactulose works on me in bout two hours and the cleanout takes about two hours. i just make the decision to stay up till 1am and i can still have a reasonable evening, go to the gym or go out, whatever. I cant imagine going away for the weekend like i did last week and spending half an hour on a Shared bathroom floor with a rubber tube up my butt. As it was my anxiety over my bathroom issues ruined the weekend for me and caused such bad constipation that i had to beg off and come home.

Is the whole enema routine faster?

I would be pleased as punch if I could simply schedule a few hours of home time every third day courtesy of the lactulose or an enema and get on with life, like you say. I feel like ive worked so hard to get on top of depression, and now Im going dwnhill again because of this.

I dont know how you feel, but i wish it was easier to just know what the issue was - radiation damage, scarring, strictures, slw transit etc and youd know how the hell to fix it.
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Re: Can I use a laxative post reversal

Postby Peloton » Fri May 11, 2012 10:18 pm

Jachut -

The one downside of a daily enema, in my opinion, is that it is somewhat time consuming. From the moment I walk into the bathroom until the moment I get off the potty, it usually takes 45 minutes to an hour (it has never taken more than an hour). I try to fit it into my routine as much as possible. I administer the enema and then have about 10-15 minutes before the fireworks start. I use that time to wipe everything down with a clorox wipe, wash my hands, and brush my teeth. Once things get moving, it takes about 15-20 minutes to get cleaned out. It usually comes in three or four waves. I then shower and get on with my day.

(Note: I use tap water. At first, I started off with fleet disposables and it made things worse. I'm not sure what they put in there, but it really irritated my colon.)

As a guy, I use to only need 30 minutes to get ready for work in the morning before this whole cancer thing. Now, I need at least an hour, and sometimes closer to an hour and a half. That has been an adjustment. I spoke with my boss (didn't go into details, although she knows I'm in remission for stage 3c), and she's cool with me coming in late and staying late. Although I didn't make a formal request, it's generally understood to be a "reasonable accommodation" mandated by the ADA. So that has worked well.

There are may ways to go about administering a daily enema. This gentleman administers one while in the shower, and it seems to save a lot of time. I haven't' got that far yet, but might give it a try.

http://www.lowrectalcancer.com/

I hope this helps.
Peloton
 

Re: Can I use a laxative post reversal

Postby nicola smith » Sat May 12, 2012 8:00 am

Re my biobidet post above...for me, using the enema function on the biobidet is a matter of minutes or less - of course I have a jpouch which has much less capacity than a colon, and the clear out is probably not as thorough as with a traditional enema set up.
UC history
11/09: Dx
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
03/10,11,12&13; 06/14: CT NED
04/12: PET/CT NED
03/13: port out
CEA ~3 mnths: 2.9@dx,.9,1.7,1.5,1.1,1.3,.8,.9,.9,1,.9,.8,.8, 1.1,1,1.1,1.3,1.2
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Re: Can I use a laxative post reversal

Postby John72 » Fri May 25, 2012 3:48 pm

I figure I should put an update.

I discontinued use of Metamucil about a week ago. It was making things too bulky and I think created a situation for me that probably was more excessive than it needed to be.

Started using a morning enema yesterday and things aren't perfect but are LOTS closer to normal.

Yesterday I was able to withstand a 3 hour plus meeting without excusing myself. Today, I last went at 9am, walked the mile and a half into work, ate lunch, and still don't need to use the restroom.

I use water only(no chemicals), and it takes around 30 min to an hour to clear out. This is vastly superior to the 2-3 hours I used to have to spend near the restroom every morning.

Near as I can figure, my muscles and tissues at the lower part of my colon were damaged significantly from surgery and radiation and do not entirely work.

The enema functions to push everything out that was previously being held up.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan
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Re: Can I use a laxative post reversal

Postby Peloton » Fri May 25, 2012 4:15 pm

John -

I am very happy to hear that you have found something promising. A daily enema can be a real life saver. You are still very early in the process, so things will probably continue to get better and you will be able to get more of a clean out with each enema. I've been doing this for about two months now and am still tweaking with my routine. I figure it will take a while before I am done tweaking. But in the meantime, a daily enema has really helped. Like you, my biggest problem - so it seemed - was the lack of push muscles. It would take forever for everything to get out. Now the enema does it for me.

I started off very slowly. Now, I put about 40 ounces of tap water in the enema. Accounting for spillage, I'm guessing about 36 oz actually gets where it needs to go. Also, after I administer the enema and am waiting for the fireworks, I gently massage my abdomen in a counter clockwise manner, the hope being to gently push the tap water farther back in my colon. I'm not sure if it actually does that, but figure it can't hurt.

It takes me about 45 minutes, which is a drag. But it's definitely better than the 2 hours or so during a big cluster. I try to make the best of it by putting the radio on and having a good assortment of magazines.

It's not a perfect system, but it appears to be working for me so far.
Peloton
 

Re: Can I use a laxative post reversal

Postby Jachut » Fri May 25, 2012 6:11 pm

Good to hear that you're having some relief.

You know i think we rectal cancer patients can drive ourselves mental trying to make a program or solution for people with no colon fit us.

All the bulking in the world doesnt help me because i already have soft stools, i am not truly "constipated" in that sense. I just cant push it out! In fact slowing down digestion and making stools bulkier makes it worse! Hence the success of laxatives - a liquid mess propelled ny strong peristalsis and gas - stand back!!
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