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Discussion Starter · #1 ·
I have been suffering with chronic constipation for almost ten years now. I suffered a broken neck from a freak fall in 2004 and ended up with nerve damage, a bruised spinal cord, and multiple rods/screws in my neck. Due to my daily struggle with pain, I have been on suboxone for some time and while suboxone has been an absolute miracle drug to me, there is definitely a down side to taking it....constipation. I only take one pill per day, but it still binds me up like crazy. I have dealt with it on my own for the past ten years but have been getting significantly worse in the last 12 months or so. I have blood in my stool about 90% of the time and am always straining when I DO go. I have tried A LOT of things to deal with the constipation....fiber pills, fiber capsules, mineral oil, castor oil, milk of magnesia, stool softeners, senna, cleanses (multiple types from GNC and CVS), probiotics (3 or 4 different types), daily activia, suppositories, and of course, enemas. I got more active, I tried to eat more vegetables, and I drink about 75 oz of water every single day. Still, I only go once per week, and I usually have to force the process with an enema. I NEVER feel totally cleaned out, and the bloating, discomfort, lower back pain, and gas make me MISERABLE. I am always worried about taking things on a daily basis...since everything I have used says "don't use for more than 7 days...10 days..." etc. I finally went to see a gastro doctor and he did a colonoscopy immediately based on the blood in my stool. Everything was OK (thank God) but he did find some polyps and of course hemmoroids. Immediately after my colonoscopy he gave me a prescription for Linzess, 290 mg capsules, once per day. I was so excited to finally have a daily pill to take that would help me, instead of doing all of these regiments that had little to no effect. The first day I took it, I was very uncomfortable (as expected) and had a lot of gas and churning in my stomach, but no bowel movement. Over the next few days, I continued to take it and still had some pretty significant discomfort, but I dealt with it. On about the 3rd day....YES! I actually had a regular bowel movement! I was so excited and hopeful that this medication would finally be the end to my misery! It has now been another week since the first successful elimination day, and nothing. I have been taking the pill each morning on an empty stomach, same time, each day. The discomfort is now very minimal (if anything at all), and the results are in turn very disappointing. I have resorted to adding back in my daily probiotic and taking fiber pills 2-3 times per day again. I also went out at lunch today and got some Miralax to start taking because I am seeing that mentioned a lot by other sufferers.

Can anyone give me some feedback on what they think is going on? Do I continue to take the Linzess? What about Amitiza? Can my probiotics or fiber pills be counter productive, while taking the Linzess? Reading through this site has been so incredibly helpful, and I want to thank everyone for their contributions. For the first time in a very long time, I feel like I am not utterly alone in all of this.
 

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Chrissy--i am so sorry for all your problems and all your pain. all that pain really complicates things doesn't it.

has your doc mentioned relistor to you? relistor is a med that treats constipation caused by opiod medications. so it very well may work to treat the constipation caused by suboxone. ask your doc about it if he/she hasn't suggested it. from what i've heard and read it's helped a lot of people with opiod-induced constipation.

about linzess--i have slow transit constipation and pelvic floor dysfunction. linzess did work a bit for me the first few days i took it but then each day after that the amount of stool i was able to pass went down while the side effects--nausea, bloating, etc--went up. after about a week it wasn't working at all for me. i was on the 290 dose. the 145 dose did nothing. it is disappointing isn't it when a med starts working and then quits.

some people have found that taking a combination of linzess and miralax helps and works better than linzess alone...

i would definitely look into relistor though if i were you...especially if you feel your constipation is caused at least in part by suboxone. good luck! hope you find something that helps!
 

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I'd give the doc a call back to see if the combo of Linzess + Miralax might be a good option or if there may be a dose change needed.

Unfortunately a lot of times it takes a bit of tweaking but that it seemed to help some may be an indication it could be a part of the solution.
 

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Discussion Starter · #4 ·
Thanks so much for the feedback! I will speak with my doc about that medication but the fact it is an injectable drug makes me nervous!! :) Does anyone know if taking Linzess twice a day is an option? Doubling the dose? I'm sure that would reek havoc on my system but I was just curious. Is 290 mg the top daily dose?
 

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A quick google shows that is the usual top dose, but I don't know if there is information about upping it. I wouldn't without the doctor's advise. I don't know how much above the usual effective dose the toxic dose is.

Some drugs have a really wide margin of error and some have a pretty narrow one.
 

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oh yes--i agree with Kathleen. you definitely would not want to double the 290 dose without your doctor's advice. and some people have reported an increased heart rate on linzess. another reason to be very careful.
 

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Discussion Starter · #7 ·
That makes sense. I'll talk to my doctor first. One more question...how about amitiza...is that an option? Is linzess stronger than that medication? I don't know much about it...
 

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oh yes, amitiza is definitely an option. i always feel it's definitely worthwhile to try anything and everything. you never know if something will work for you unless you try it. and we're all so different in how our bodies react to medications--what works for one person may or may not work for another but it's all worth a try.
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both meds work by promoting colonic motility by increasing intestinal fluid--they just work in slightly different ways to do that.

like linzess, amitiza is available in two different dose strengths--8 mcg and 24 mcg. if one doesn't work try the other. from what i've read quite a few people found that the 8 mcg worked better for them than the 24 mcg.

one thing different about linzess though is it's supposed to also help relieve abdominal pain and bloating in addition to helping to promote a bm. it acts on some nerve receptors and stimulates them to inhibit the pain response and reduce bloating as well as increase motility.

good luck--i do hope you find something that helps. take care..
 

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i just remembered a couple more things people have done to tweak linzess --either to get it to work or to get it to work better..

take it in the am with a cup of black coffee a half hour before breakfast.

some gastros have advised taking it with a stimulant laxative if adding miralax doesn't help first. start with a low dose stimulant like senokot and work upward if necessary. some people had good results taking it with senna (ex lax) --some with miralax and senna both...

and of course it would be nice if it just worked all by itself and for many people it does but for some of us stubborn cases
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it may take tweaking.

another thing and i've mentioned this on the board before so maybe you've already read it but-----one of my gastro docs has done research and has run clinical trials on linzess. he told me that linzess works on the same receptors that food does. so generally, the closer you take it to eating a meal, the more diarrhea you get. and conversely, the more time that elapses between taking linzess and eating, the less D you get. it's all in experimenting and finding out what works best for you.

so if you're getting too much D try taking it an hour before breakfast instead of a half hour before as prescribed. you'll probably have less D that way. some people take at even two hours before eating or at night, on an empty stomach, before they go to bed.

yes, there are people who take linzess at night (on an empty stomach) because they find it works better for them that way and doesn't give them as much diarrhea as when they take it as prescribed, a half hour before eating breakfast. like i mentioned--that's the food effect. the closer you take it before eating the more D you get. conversely, the more time that elapses between taking linzess and eating, the less D you get. it's all in experimenting and finding out what works best for

another thing. i've read and heard that these meds -- linzess, amitiza and back in the day, zelnorm--- are more like bowel regulators --they're not laxatives--and so they work best if you're not all backed up to begin with when you start taking them. if you are backed up it's best to do a clean out first before trying them.
 

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Discussion Starter · #11 ·
Just thought of one more thing....what about taking probiotics in addition to the linzess? Will the probiotics interfere with the linzess? (In ur opinion of course ;) Before my colonoscopy I was taking a probiotic that seemed to start working a little right before I had to stop everything for my cleansing. I don't know much about probiotics.....

Thanks again! Ur a life saver. I'm 34 and while it makes me uncomfortable to talk to my husband about these things, other people will usually just discount everything I say. I'm too young...I don't have a debilitating disease that would cause such difficulty....drink more water...ill be fine. So frustrating....
 

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i haven't read anything specific about taking probiotics and linzess but i don't think it would hurt to do so. if taking probiotics with linzess interfers with linzess or causes an adverse reaction i would think that would be mentioned in the patient instruction sheet that comes with the script. or online:

http://www.frx.com/pi/linzess_pi.pdf

that's good you found a probiotic that seems to help.

oh you're more than welcome. i do understand what you mean--it is hard to talk to many people about these things and yes you're right--many people do discount what we say, how we feel-- they say-- we don't "look sick" etc. little do others realize how debilitating and hard to treat chronic constipation really is. and oh yes--if i hear one more "drink more water" or "it's your fault--you don't eat right--exercise right" "eat enough fiber" etc etc---honestly--i'll just
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scream--lol..
 

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i have been taking this 145 dose for a week , wow what wonderful drug and as I know whe it im completely empty 2 hours later , I then can go on with my life,

12 weeks ago all of a sudden i stopped going to the bathroom I stopped the dumping syndrome , I had my gall bladder out 3 years ago, went to gastro doc they did a colonoscopy that week found I had internal roids, and a polyp bigger then most it was not cancerous but big, doc said Im under so much stress my colon doesnt spasm anymore so I did the usual stuff accupuncture herbs stress techniques anyways make a long story short it didnt help and I wasnt pooping anymore life had to get back to normal at least somewhat, did google searches ARGH DONT Ever do that though oh I have pelvic floor disfunction I have all kinds of problems and being in the medical scene that didnt help, gastro doc said take linzess see if this work I was apprehensive but miralax to me makes me bloated aggitated and no appetite so i started taking this and I feel great yes it gives me the runs and for 2 hours after I take it , at 530 every morning after my one and only cup of coffee by 715 im going to the bathroom, by 830 im done and off with life, Im going to start taking it every other day and see how it works, my headaches in teh morning when I wake up are slight but go away , im getting urges to go in the morning but still no dumping syndrome weird huh, what use to go through me after I eat doesnt anymore, my colon could still be stressed or I could have another problem but my blood tests and exams came back good I know NO more searching on the internet no matter waht to self diagnose me….. i dont take probiotics, or enzyme pills no mroe chinese herbs or gallons of aloe juice i eat normal and back to walking a few miles being happy and not worrying about going poop my life was such a mess worrying about not pooping it changed, I hate my husband being he has never had constipation in his life he feels for me but doesnt have a clue what we have to deal with , so Ill take linzess and hopefully it will work for me until one day just hoping ill be back to "normal" whatever that is.
 

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linzess comes in two doses. have you tried the 290 dose? just take two 145's...it's always a good idea to check with your doctor first of course before doing this.

for the pelvic floor dysfunction--have you tried biofeedback/physical therapy. sometimes that helps. also elevating your feet on a footstool or shoebox while on the toilet can help..and not straining, etc..

this u-tube video has a lot of helpful tips--how to empty your bowels without straining:


good luck...hope you find something to help and find some relief.
 

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Hi... new to the site (which is wonderful) but not to the IBS-C thing.

Have had problems off and on for about ten years or more. Considering all I've read from some of you, I've gotten off easy. SO sorry to read about how difficult it's been for you all. I can say I've been to some of those places and it scares me to death, thinking it could go there again or even worse. Was on Miralax for three years via script from gastro doc but it stopped working when i started synthroid last year. It actually got to be toxic for my body so i'm glad it stopped working on its own. Tried Amitiza...made me violently ill! Zelnorm worked years ago but, we all know how that went. Dulcolax is a KILLER for my system. Can't touch it, even the suppositories! Dietary supplements don't seem to do a bit of good. Flax oil helped a tad, as do stool softeners. I've heard, "Eat More Fiber" from so many docs that it makes me ill to think about going to them for anything.

Linzess didn't work for me until I figured out I had to take it way early in the am. Not just thirty minutes before eating. Tried that...NOTHING after the first dose or two. I generally wake up at any sign of daylight anyhow, so it's not a problem. I also have to take synthroid before eating and, once I got used to the routine, it's no problem. On the good days, the Linzess works about thirty minutes to a couple of hours after eating. I was taking the higher dose via my doctor's samples but I HAD to stay at home every day I took it. The lower dose can sometimes be unpredictable also; if I have plans to be away from home early in the day, I don't take it, which can cause problems, as it seems skipping even one day can make matters worse. Also, if I don't keep up with the minimal amount of fiber my body can stand, prune juice each time before eating, and lots of water, I get into trouble. The lower left pain starts and that's a signal to me that I messed up. Had an ER visit and short hospital stay in October because of diverticulitis and do not want that to happen again. The ONE thing that stops that lower left pain for me is muscle relaxers. I take them occasionally for neck and back pain and discovered that they were good for the diverticula pain by accident. No doctor has ever mentioned that to me, nor have they explained that IBS/diverticulitis pain isn't always localized in that lower left area. Now, when the pain starts, I take one senecot at night to help things along. So far, so good. FINGERS CROSSED!

I gave up on Linzess twice before I discovered when best to take it. I realize it's so different for all of us but when something helps one person, I try it if I can. I got manufacturer's help with the cost of Linzess; with insurance, my cost was one hundred bucks. Now, it's $36.00. Do not know why they kicked some in and do not know how long it will last. Probably ends with my next script renewal. I hold my breath at the pharmacy each time I get a refill. Good luck and good health to you all...and thanks for being here!
 

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HI Josie--so glad you found a way to keep linzess working for you!

linzess has a "patient price savings program." i haven't used it but near as i can tell from reading about it on the manufacturer's website it looks like if you qualify and you're buying it from a "participating pharmacy" then it automatically kicks in when you go to pay for it....something like that--lol..here's the link that explains it all.

https://www.linzesshcp.com/patient-resources-and-information.aspx
 

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It seemed as if Linzess was working for me for about 3 weeks, but now nothing really. I've tried experimenting with time of day to take it. Having a really rough time. I was so hopeful that Linzess was going to help me over a long time.

I had had a pretty good couple years with pretty regular BM's and felt pretty good. Then this year, everything changed. When I mentioned it to my doctor, I got the old "as we age..." Yuck, hate hearing that.

I'm going to keep using Linzess for a little while and then give up.
 

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razzle--i answered your question over on your other post...
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My gastrointestinal doctor today told me that in addition to the linzess (which my gp started me on in October) it was safe for me to take Miralax 3 times per day, benefiber 3 times per day as well as colace 3 times per day. I asked her why do they have all the warnings about no longer than a week etc. She said that was so you would consult a Dr and rule out things like colon cancer, IBD, etc. In my case, I've had all that ruled out. The linzess has helped me greatly with the pain control which none of the other items I mentioned above could do so. As always, check with your doctor and tweak as needed to find something that works for you. I had to go to the GI today due to my insurance company only accepting IBS-C diagnosis from a GI doctor even though I had a colonoscopy and all the various work ups over the last 7 years to rule out the other bad culprits of this stomach mess and was diagnosed with IBS-C by my gyn 3 years ago! Was nice to be validated by the GI doctor today that I'm on the right track and she agreed with my other two doctors that I have IBS-C.
 
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