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Linzess-- experiences, side effects, efficacy?


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Soooo, I went to my gdoc a couple weeks ago for severe constipation...or what I consider to be severe constipation-- basically 2 weeks of not going daily (when normally I go 1-2 x a day) and only going about once every 3 days (then having major diarrhea for several hours, then being plugged up again for 3 more days, etc etc).

 

My belly was so bloated and full, and I couldn't take it anymore so I went to the doctor.  I was also scared to take any kind of laxative due to my Hx of bulimia (which started with laxative abuse).  My gdoc sent me for several different kinds of tests and prescribed a prescription laxative (Lactulose) for 3 days.

 

The tests were normal, the laxative did it's job after about 2 days and I was pooping regularly after that, but the gdoc still wanted to put me on something at my follow up appointment, presumably for IBS.  (I was tentatively diagnosed with IBS a couple years ago, but it was diarrhea-predominant.  This was by a different doc in a different state, and when I didn't want meds right away to treat it, he basically told me there was nothing he could do for me, so I just put up with it, and my symptoms abated).

 

I kind of think a lot of this has come about because I've been under an exorbant amount of stress at work.... and it's work where I am more apt to be constipated, with diarrhea on the weekends it seems.

 

So, she gave me about 3 weeks worth of samples of Linzess....which kind of worried me because my IBS (if I do truly have it) has tended to be diarrhea predominant-- this is the only major bout of constipation I've ever had in my life, and it was resolving and starting to actually go the other way.  But, everything was rushed as it always is at the gdoc office, and I felt like a nuisance/not treatment compliant voicing my complaints.  (When I was going to her for chronic neck and back pain stuff, she got mad that I didn't want to go on Lyrica because I I didn't want to add a psych-ish med when I'm tapering and changing psych meds, so I stopped talking about my neck issues.)

 

Well, I've been on this Linzess now for 4 days, and I feel like total shit (no pun intended).  My poop was "normal for me" (1-2 x a day) for the first 2 days with a lot of gas/indigestion/bloating.  Then yesterday I went about 5-6 times, but today I've gone about 15 times-- not necessarily diarrhea but just a lot of sudden urgency to go, and it's fairly "loose."  It's right now interfering with my ability to fall asleep because I've gotten out of bed about 5 times in the last hour alone.  Also, I had a hard time sitting down comfortably at work earlier because I'm so sore from all the wiping yesterday and this morning.  

 

I really don't want to keep experiencing this, and I never wanted to be on an extra med if I don't need to be.  Is it reasonable for me to call the doc tomorrow and tell her I don't want to take this med anymore, or should I give it more time?  Also, does it sound premature for me to take a med for chronic constipation/IBS-C (when this was my first bout of constipation and I've always tended more toward diarrhea)?

 

Thanks for reading..... sorry for being gross and talking about poop.  :o

Edited by Lady Krazy Kat
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I'm on this also.  Part of my life is planned around taking this med.  Fortunately I like being up at night, so I take it on an empty stomach, wait 2 hours, then eat, and have diarrhea anywhere from 3 times to maybe 10.  It take a few hours after it all starts to all come out.  So early evening I take it, then wait then etc, like I wrote above.

 

It has totally saved me though because I had been so constipated. 

 

I would much rather have the diarrhea than the bloating and feelings of constipation.  My DR knows all of this, and said as long as it is ok with me then it is ok.  The reason he said that was because even though I have a lot of diarrhea, after 6-8 hours I might go again, but it is normal.  So for me it is all or nothing.  And I'd personally rather have all.  And it isn't like I go 24/7 all day long.

 

In the beginning I skipped nights until my body got used to it.

 

But yes, this med will probably get everything out of you, eventually.  At least for me it did. 

 

 

ETA:  I take it for IBS-C

Edited by melissaw72
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I was started on Linzess 145 a week ago.  After tomorrow, I will be on the higher dose.  I've never been diagnosed with IBS, however.  Because of some other issues I have, my system doesn't work well so constipation has been a constant (as in more than a decade) battle.  My biggest concern was weight gain.  I've read on message boards that people report gaining up to 50 pounds the first or second month. I also read that after the first couple weeks, people gain 12 pounds.  I don't know if this is true, but it was one of my concerns.  After a week on it, I feel bloated and bigger-  but my jeans fit the same.... soooo, I don't know.  I'm still waiting to see what happens in that respect.  I have a follow up in a couple weeks and maybe I'll discover I put on some weight.

 

As for other side effects, I've had bloat and a lot of gurgling.  No diarrhea...at all.  In fact, it worked great the first couple days, but now,  it doesn't do much.  I was told to stop taking it and call in if I did experience heavy diarrhea (as in, it doesn't stop or gets in the way of life) OR if I pass bloody or tar like stool.  I've not had any of that.

 

Maybe I will experience it on the higher dose.  Then again, maybe the higher dose may be enough to make me normal... because THAT'S how screwed up my insides are.  However, I have fears that the high dose will cause weight gain.  The weight gain isn't anything that has been reported by the company that puts out the med.  It's mostly just people taking it who wonder why they are experiencing higher weight on the med.

 

I hope that helps.

 

Oh and be careful of dehydration with the diarrhea. 

Edited by sourlemon
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I have not tried this med (my specialist told me it would make my diarrhea much worse, I alternate wildly). I wouldn't think if you have only had one single bout of constipation that you should be taking this med (of course unless you want to). Simple measures like trying a fibre supplement or slipper elm may help, even maybe just an extra serving of fruit or more water. I too had a major bout with constipation last November and ended up in the ED being pumped full of laxatives (I believe they gave me 3 shots of 3 different things that ended up doing nothing). I keep a bottle of colace (the one without senna) in the house and if I skip a day on the toilet, half a tablet generally softens things up enough to move the next day.

Another option if you want to be taking anything is movicol (miralax in the US). Tastes like garbage but will keep things regular with less side effects (although it did make me bloat for a couple of hours after I drank a sachet).

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Miralax didn't really work well with me ... it took sometimes a day or 2 to work, and that whole time waiting I'd be bloated. I did drink it with orange juice, and all you could taste was the OJ.  It totally masks the flavor.

 

I agree with Jessamine that if you had only one bout of constipation, this med wouldn't be a good idea to take (unless you want to).  I was told it is for chronic constipation.

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Thanks for the input, guys.  

 

Last night sucked royally, which I attribute to the Linzess.  Even though I took the Linzess at 4:30am when I woke up, I was on the toilet every 15 minutes or so between 9 and 11pm, about 16 hours after I had taken my last dose.  I had already pooped several times throughout the day.  The late-night multiple poops are HUGELY problematic, as I have to be up at 4 or 4:30am to be at work for 5:30, so I go to bed between 8 and 9pm.  Because I take sleep meds and require a full night's sleep (I think I pooped out my trazodone last night), this is not good.  At this point (maybe because my constipation isn't so chronic at this point), sleep is more important. I think taking it at night would be worse (because I also poop during the day shortly after taking it).  

 

 

FWIW, my current gdoc doesn't have me diagnosed with anything in particular that I know of, but my previous gdoc diagnosed with IBS-D a couple years ago.  I haven't had a flare up until recently, which this time it was constipation.  (So, I guess I would be alternating type now?)  I feel like my gdoc now was quick to give me the Linzess without asking about history of diarrhea or other stuff like that.  She is always super-rushed, and I feel like I'm talking too much there and annoy her.  

 

 

I already was starting to go more regularly after she prescribed me the prescription laxative (lactulose).  As it stands, I get too much fiber in my diet (I'm vegetarian and don't eat a lot of dairy/animal products, so pretty much EVERYTHING I eat has tons of fiber), so I have to figure out ways to cut down-- I've heard that too much fiber can cause or exacerbate constipation too, and my gdoc confirmed this.  So basically I am trying to just watch what I'm eating, trying to drink more, and making sure I get enough exercise.

 

I don't know if I *should* have done this, but I didn't take the Linzess this morning.  And I had several poops today and this afternoon, probably about 8 in total.  They aren't total poops-- I wish I could get my body to consolidate the bathroom trips into one or 2 larger movements, but I don't think the Linzess will necessarily help me accomplish it, as I think I pooped about 15 to 20 separate times yesterday.  I'm going to go without it tomorrow again and see if I still have success with going like I did, and if so I will call my gdoc and tell her I don't want to take it/have stopped taking it.

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How about taking it like every other day, or every 2 days or something (if your DR says it is ok)?

 

Yes ... for me too, too much fiber makes constipation 1000x worse.  I limit that daily.  I hate when people say it will help constipation because it really doesn't in all people.

 

Once you're body gets used to the Linzess, things might regulate more.  Maybe not, but for me I was able to get it all out in a time frame once my body was used to it.

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How about taking it like every other day, or every 2 days or something (if your DR says it is ok)?

 

Yes ... for me too, too much fiber makes constipation 1000x worse.  I limit that daily.  I hate when people say it will help constipation because it really doesn't in all people.

 

Once you're body gets used to the Linzess, things might regulate more.  Maybe not, but for me I was able to get it all out in a time frame once my body was used to it.

 

Yeah, I tried to go without the Linzess again today, and though I had one very small movement, was feeling really bloated and backed up, so I ended up taking it around 1:30pm (on a fairly empty stomach.... I think all that matters is you have an empty stomach and don't eat for at least 1/2 hour though the recommendation is to take it in the AM.)  

 

I read on some IBS forums that some people take it every other day because every day is too intense.  I think now I'm going to take it every day and give it a week before calling my doctor to make changes, while also really working on my other positive eating/drinking/exercising behaviors.  I also have had some ED behaviors recently in the past couple weeks, so I think that may also play a role in what's going on with my bowels.

 

I'm also scared that the Linzess will trigger me to want to use laxatives (that's how my bulimia started in my early 20s), even though I have been informed that it is NOT a laxative.  Hopefully taking this med will help me steer clear of the other ED stuff (not prevent it pharmacologically but motivate me to do healthy behaviors because I want/need to get back on track with my bowels.  I feel like shit, no pun intended, with this alternating constipation and diarrhea stuff.)

 

I know you have a Hx of ED stuff.... If you don't mind me asking, did taking the Linzess ever trigger ED urges for you?

 

Fibre is evil for my IBS. I was vegetarian for a number of years too and was more constipated (and in way more pain) than I've ever been.

 

I believe I've read there's a difference between types of fiber, i.e. insoluble vs soluble fiber-- and that soluble fiber can help with IBS stuff (whether constipation or diarrhea predominant) whereas insoluble can make it worse.  I usually have had very healthy bowel movement to diarrhea while eating vegetarian (been veg for 11 years), so the constipation is way weird.  I don't see giving up the vegetarianism as an option for me-- I don't really do it for animal welfare reasons anymore, still somewhat for environment reasons, but mainly because I detest meat and am used to this.

 

I've heard that it's not drinking enough water that can be the big problem with consuming a lot of fiber rather than the fiber per se.  For a lot of my life, I have been chronically dehydrated-- well, don't know if I'm clinically dehydrated, but I used to consume only a couple glasses of water per day, if that.  Over the past 6 weeks, I have been making a huge effort to drink more water and now drink at least 64 oz, sometimes up to 128oz (even since I fainted for the first time, which was attributed to dehydration.)  

 

Interestingly, shortly after I drastically increased my water intake to healthy levels, that's when the constipation started.  That may just be coincidence though.

Edited by Lady Krazy Kat
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Yeah, I tried to go without the Linzess again today, and though I had one very small movement, was feeling really bloated and backed up, so I ended up taking it around 1:30pm (on a fairly empty stomach.... I think all that matters is you have an empty stomach and don't eat for at least 1/2 hour though the recommendation is to take it in the AM.)  

 

I read on some IBS forums that some people take it every other day because every day is too intense.  I think now I'm going to take it every day and give it a week before calling my doctor to make changes, while also really working on my other positive eating/drinking/exercising behaviors.  I also have had some ED behaviors recently in the past couple weeks, so I think that may also play a role in what's going on with my bowels.

 

I'm also scared that the Linzess will trigger me to want to use laxatives (that's how my bulimia started in my early 20s), even though I have been informed that it is NOT a laxative.  Hopefully taking this med will help me steer clear of the other ED stuff (not prevent it pharmacologically but motivate me to do healthy behaviors because I want/need to get back on track with my bowels.  I feel like shit, no pun intended, with this alternating constipation and diarrhea stuff.)

 

I know you have a Hx of ED stuff.... If you don't mind me asking, did taking the Linzess ever trigger ED urges for you?

 

I started taking it every other day until my system got used to it, then every day works for me.  Personally I go 2 hours after I take it on an empty stomach before I eat something.

 

Linzess "acts like" a laxative with me, so personally I have no desire or need to ever need a laxative.  I know what you mean about the alternating constipation/diarrhea stuff.  It really sucks.  I find that taking Linzess every day gets rid of that.  I have diarrhea every day, but I'd rather have that than be constipated.  I have been constipated since I was a kid, and I wished way back then I had some help.

 

No, Linzess never triggered ED urges for me. (I don't mind you asking :)  )

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Soooo....I ended up taking Linzess for about 8 days,  I would be severely constipated for a few days, then poop about 8 to 15 times in a day, then constipated again for  2-3 days, then poop excessively, etc.  And the bloating and pain (gas pain and reflux pain, which I've NEVER had the latter before) was unbearable.  So I stopped taking it last Friday.  

 

I was able to have normal poops over the weekend, and during the week, have been going every other day.  I still feel blocked up and get pains until I am able to go (and don't feel like I'm going completely), but at least I know that these are symptoms and not side effects.  

 

I really think it was premature of my gdoc to prescribe that to me (actually she just gave me samples).  I'd prefer to try, like, looking at what could be going on in my diet or whatever that would cause this.

 

I haven't called my gdoc to tell her I stopped-- obviously will tell her at my appt a week from today, and hopefully, I'll become more regular.  I did, however, tell my pdoc.  The reasons I don't want to be on the Linzess is as follows:

 

1.) It was making me obsessive about my bowel movements and triggering me to want to use laxatives (because I wasn't going "# 2" often enough while on the Linzess).  I was also checking my stomach a lot in the mirror to see how bloated I did or did not look.  Melissa, that's why I asked you if it triggered your ED issues.  But I think I read in one of your other posts that you've been recovered since like '08 or '09, whereas for me it's been shorter.  I haven't abused laxatives since 2006 (and that was only brief, a couple months) and I was recovered from 2007 to 2011-ish.... only been "ED-sober" for a few months again.  

 

2.)  I am tapering off Zoloft, and while constipation is not a typical W/D effect, it is POSSIBLE (per my pdoc and pharmacist), as is diarrhea (more likely).  I want to be able to tell what is the effects of the Zoloft taper as purely as possible (obviously, if I have a relapse in my psych symptoms I will go back on a different med, but right now the W/D is just physical and neurological/cognitive).  I don't want "too many cooks in the kitchen" if I can help it.

 

3.) I believe (and my pdoc supports) that this recent IBS flair up is also stress-related (in addition to taper-related) because it corresponded almost perfectly to my workload increasing by about 40%.  (One clinician fired, one quit, one on maternity leave all within a month span). Caseloads were already about 5 clients higher than they are "supposed to be," and we were looking to add a staff due to expansion of the agency before the shit hit the fan.  Things are slowly improving (we hired a new person who'll be taking over some cases next week, and another new therapist is starting next week and will be seeing clients in about 3 weeks).  

 

4.) I honestly trust my pdoc's opinion WAYYY more than my gdoc (even though this is a GI thing outside either of their realms of expertise, TBH)-- my gdoc is nice enough, but she is quick to prescribe meds unnecessarily and is very rushed and absentminded.  My pdoc tends to be more conservative (willing to try other things before meds, somewhat holistic like in a "asking about diet and exercise kind of way" not "new age-y and anti-meds.")

 

Anyway, I just wanted to conclude my "Linzess saga" because you all have been super helpful and for posterity's sake in case anyone searches in the future.  Also, I think I'll print out my "list" of reasons to have when i see my gdoc next week.  

 

Thanks again.

 

Edited for: Clarity

Edited by Lady Krazy Kat
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Melissa, that's why I asked you if it triggered your ED issues.  But I think I read in one of your other posts that you've been recovered since like '08 or '09, whereas for me it's been shorter.  I haven't abused laxatives since 2006 (and that was only brief, a couple months) and I was recovered from 2007 to 2011-ish.... only been "ED-sober" for a few months again.

 

You're right, I have been recovered since 2008.  I can understand where you are coming from with being recovered a shorter time and becoming obsessed with this.  I'm glad you have that insight.

 

IBS can be flared by stress, so you are probably right about that.  Maybe you can ask your DR if you could have some on hand just in case there comes a time when you really need something badly to go to the bathroom.  You've tried it (Linzess) already, so you know how it reacts with your body.

 

Definitely a great idea to print out this list of reasons for your DR so you can make sure not to miss anything when explaining why you don't want to take it anymore. 

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Good luck with your appointment with your gdoc :) I understand you not wanting to change your diet, I hope it didn't come across as though I was encouraging you to do so! I gave it up because I was intolerant to so many of the foods I needed to eat to stay healthy that it kind of stopped being an option (I really miss it though).

I have the water problem too. I try my hardest but 3 glasses of anything a day is about my limit (I mean to drink more I really do but I struggle with it so badly).

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