# Linzess Review



## stressedmess

I've been on Linzess for about 2 weeks now and I thought I could share my experience with it. I've had IBS-C for a year and my symptoms are Constipation, excessive Bloating/distention, and gas. It helped my bloating and gas a lot when I started to follow a gluten free and low FODMAP diet but I still had to deal with the constipation.

So anyways, I started out with the higher dose of Linzess (290mcg) and I took it in the morning. Later, after I ate lunch, I had mild cramping and a half hour after those cramps I was in the bathroom 6 times. I had about a 2-5 minute break between each BM before I went running to the bathroom again. After that stopped, I would drink water and a second later have the urge to go again. It was awful and the same thing happened when I tried it again the next day. I even tried it before I went to bed instead of in the morning and I still had watery diarrhea 6 times.

I moved to the lower dose (145mcg) and I took it at night time because I like to have BMs in the mornings and hoped that Linzess could help with that. When I awoke I thought a miracle occurred. I had a normal looking BM and it felt completed and I felt empty and it was great. This greatness continued for the next three days. I even sometimes went after lunch which was nice too. But then I decided to take my Omega-3, VSL #3, and Vitamin D supplements before bed too with Linzess and I woke up and had diarrhea and went to the bathroom 3 times in a row and had cramps all day. The next night I decided not to take all those supplements with Linzess like I normally didn't and I woke up with diarrhea and went twice. I really hope this goes away I was feeling so great. This diarrhea makes my stomach sore and gurgley and I always feel like I'm going to get the urgency to run to the bathroom again


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## annie7

thanks for the update. sorry it's been so problematic for you. it sure would be so wonderful if it worked better.

my gastro finally got his linzess samples in. he didn't give me too many and they're just the 145 mcg--guess that's all they got in. i'm not going to start taking it for a while because i'm still trailling cytotec. currently i have so many other health problems, doc appts, tests etc etc going on now as well as some road trips that i'll have to hold off on linzess for awhile. i have colonic inertia, a twisted colon and a rectocele so i really don't think linzess is enough for me--i need dynamite to get stuff moving and out--lol---but i'll get to trying it eventually--probably february when things calm down a bit around here.

hope it starts working better for you!


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## stressedmess

i really hope that it starts working better soon too, i don't understand what happened with it.

oh wow you sure have a lot on your plate this month . i'm sorry you have to deal with all that. But at least you got some samples for Linzess! I definitely don't think the 145 would be strong enough for you but if you take two together that's like the higher dose. So at least you can try both which is great! Let us know how it works for you when you finally get the chance to try it.


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## annie7

thanks, stressedmess...

oh yes i'm definitely going to start with two of them--the 290 dose. he only gave me 16 pills but at least i'll have enough for a week's trial. from what i've read about the clinical trials, most people had results within the first week of treatment and some the very first day.

i do hope it gets better for you. that's so disappointing when something works well and then it tanks. it's always so hard to figure out why--especially with these new drugs, where not that much is really known about them and not a lot of people have tried them yet.


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## AliP

Hi I am a new member with a very long term IBS-C problem. About my Severe C; am totally dependent on enema to go; live in the bathroom 3-5 hours a day and still work. It is horrible. I started Linzess 3 weeks ago, and my first week I had cramps and gas, no bm. This past week I had strong urgency but my colon is so bad that nothing will come out without enema (warm water and soap). I have had the benefit of it reducing my time in the bathroom, but not by much. I take it at night, since I am only able to go in morning. I am also on Probiotics and use 3 stool softeners a night. I am so tired of living in the bathroom!

Has anyone had such severe IBS-C (20+ years) like me out there and any luck with Linzess?

Thank you to all of you.


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## annie7

Ali--just answered your pm...


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## allura24

Hi all! I was just browsing for reviews about Linzess as I'm considering trying it, but I'm hoping that maybe I can also help some of you out as well. I have had IBS-C for almost 19 years so AliP, I understand how debilitating this is for you. I have tried numerous things (as I'm pretty much beyond the help that doctors can give me) that would help me temporarily but have never been completely normal. I am a big advocate of probiotics because most of us don't have enough good bacteria in our guts to begin with. In the last 6 months or so, I've discovered Phillips Colon Health Probiotic Caps, and I've never had more positive results. I am now regular (daily or every other day). This is a different type of probiotic than I'd ever taken before (bifidobacteria as oppose to lactobacillus). I take it once before bed and go in the morning. Now, it still sometimes requires a conscious effort. Sometimes, I have to sit before I get the feeling that I have to go but not for hours. It can sometimes require that you "train" yourself to sit at approximately the same time each morning. The reason I'm inquiring about Linzess is that although I'm finally going, I'm still dealing with distention and gas that I'd like to get rid of. For anyone interested, Phillips' Colon Health is a little pricey but worth it if it works for you. I usually buy it at Walmart, but Target also carries it. I hope that this information is able to help as many of you as possible because honestly, my quality of life was severely diminished for many years when my symptoms were at their worst. I wouldn't wish this on my worst enemy.


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## stressedmess

thank you for sharing your experience with Phillips Colon Health I'm really happy it's working for you! How long did it take before you became "regular" with this probiotic. I would like to try it out.


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## allura24

It was actually just a couple of days before I began to get regular believe it or not. I was actually still quite skeptical as it seemed much too easy after all those years of suffering with constipation, but it continues to work for me. I'm glad you're considering trying it and I really hope it works for you as well!


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## allura24

Btw, an important thing I forgot to mention...when I first started using Phillips' Colon Health, it did sometimes make my tummy feel a little queasy if I took it earlier in the day as oppose to bedtime. It is a symptom that went away with prolonged use though. Just want you all to be aware in case you try it and it happens to you.


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## Rose

I just got my prescription for Linzess, but haven't tried it yet. I'm glad I read this post, because I thought you could only take it in the morning and I hate having to go to the bathroom at work. I'm one of those people who can usually only "go" in my own house. I got the 145 dose, so I am thinking of taking one at night and if it doesn't work too well, I'll take another one in the morning and I guess if it works at work, I will have to "suck it up" and go at work even though I hate to. I just hope I don't get the "trots". I'll report back in a few days.

Rose.


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## RailFan

I'm trying it out tomorrow morning. We'll see what happens.


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## RailFan

Took it at 8:25 this morning. (The lower dose.) It's 10:48AM now, and I've had diarrhea twice. My face and scalp feel rather itchy right now, and I just felt another urge. Not impressed, so far, though I do feel "cleaner" inside. More updates later.


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## RailFan

Now 2:17PM. No diarrhea since just after 11:00AM. Had low-grade nausea, bloating, near-zero energy, and a dull headache around lunch time. Lower GI now plugged up and/or completely shut down. Dry mouth. Remaining at home, in the event something violent happens, though it doesn't seem likely now. Still not impressed.

EDIT: I'm doing some research online, and I'm seeing that Linaclotide has a short half-life. So, this stuff may already be out of my system for today? I have to remember that medicines can take weeks to reach full effectiveness.


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## RailFan

Now 5:26PM. Cold. Chilled to the bone, which is a hot sign of an impending IBS attack. (Chills are also a side effect of this medicine.) Nose has been stuffy and/or drippy all day, and that is a noted side effect, as well. Digestion still locked up/shut down; no bowel activity at all since around 11:00 this morning. Dry mouth continues. Felt some indigestion about an hour ago. With the understanding of medicines taking awhile to reach full effectiveness, I'm still not impressed. I don't feel any better.


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## RailFan

Now 11:09PM. Just had horrific gas pain and cramping. I'm not taking any more of this medication!


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## razzle5150

dr just gave me some to try but my dr said you have to be fully cleaned out for it to work properly .. so I will do the go lite and then start the Linzess ... Only 1 tablet a day . will let everyone know how it does for me ....


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## RailFan

razzle5150 said:


> dr just gave me some to try but my dr said you have to be fully cleaned out for it to work properly .. (snip)


Oh. Hadn't heard that. Thanks for the heads-up. My doctor and I are playing phone tag this afternoon. I'll mention this to him.


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## annie7

Razzle--yes your doc is right--good advice

linzess is not a laxative but a bowel regulator. so if you're backed up, do a clean out first before trying it and it will work better.


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## kab_uky

Hi guys,

I iwas at my primary care and she was very hopeful about the possibility of Linzess working for me as my IBS-C was getting worse. I was given samples of the lower dosage Linzess which I took for a week and made no difference. I have moved on to a GI doctor who said I needed the higher dosage. Linzess now comes in 30 day samples and its reps are telling the docs that it may take time to normalize the GI system and patients should stay on the medication for an extended period of time to tell if its working or not. I have now been taking the higher dosage for about a week and have extreme discomfort bloating and diarrhea. I hate constipation but with the amount of discomfort I'm having I think it's just as bad. As anyone taken this medication for longer than a week and noticed the GI symptoms regulating as time goes on?


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## CRINK

Hi everyone, my doc started me on linzess 290 about 3 weeks ago. I took it for 6 days (only able to because I'm not working right now). Within 10 minutes of taking it I felt extremely full and bloated, and my belly sounds like high tide. Within a half hour to an hour I began my run to the bathroom every 2- 15 minutes for about 5 hours. Sometimes I would just get my hands washed and have to sit back down. However, when the 5 hours was up I felt great, empty with a flat tummy. On day 7 I switched to 145 which produced the same bloat, fullness and belly sounds within 10 minutes( a little less extreme but not much). For the first 5 days, within an hour I would start running but only 3 or 4 times for about 2 and a half to 3 hours. The next 5 days side effects lessened but so didn't the amount being released, I no longer was emptying, just little bits of liquid 3 or 4 times for a few hours. The last 5 days with 145 I'm getting the bloating, fullness, with less sounds but still very uncomfortable. I have only went a teeny amount each day, but continue to feel unsafe to leave the house. So 290 worked great if you have 5 or 6 hours to be tied to the toilet everyday. The 145 not so great with the same need to stay home because you just don't know. I know once I get a job there is no way I can take it any longer. I return to my doc in 2 weeks. I am going to try to stick it out until then. Doing 145 during week and 290 on weekend.


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## RailFan

FWIW, my doctor has told me to stop taking this medicine. I gave him a run-down of what happened to me the day I took it, and he indicated I'd had too many adverse effects from it. I wasn't too surprised. My immune response is completely screwed up, account extreme, chronic stress, and I'm in a state where my body reacts to just about everything.


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## Rose

Hi All. I took the Linzess for the first time last week. I took the lower dose first thing in the morning when I woke up. I get up very early, so I was hoping it would work before I had to leave for work. Within an hour and half, it did start working. I went in and out of the bathroom a few times. It was "loose", but not Diarrhea. Then it stopped, so I got ready and went to work. I felt pretty good all day. I had some gas, but I always have gas. It was not painful and I was pretty happy with the way I felt. I had no side effects from the Linzess. So I did the same the next morning. Again it started to work within an hour and half. It was loose again, but I noticed it didn't seem to work as well as the first day, but I could live with it. I went to work and had more gas. This time it was somewhat painful gas, not debilitating but enough to be annoying and I did not feel as good as I did the first day. So the third moring I did the same thing and took it as soon as I got up. This time it started working within the hour and half, but no where near as well as it had worked the 1st day I took it. I was already feeling gas pains, but I got ready and went to work. After being at work for about two hours, the gas pain was so bad, I could barely stand up, so I left work and went home. I have not taken the Linzess since and I don't know if I dare try it again. If I do, I will take two pills for the full dose and see what happens, but if I get those horrendous gas pains again, I will not take it again. I'll let you know what happens. To be honest, so far I haven't read anything from anybody about them being thrilled with the Linzess. I had such high hopes for this drug. I feel totally let down.

Rose


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## annie7

Hi Rose--yes it is disappointing, isn't it. pretty much the same thing happened to me with it. for me the the 145 mcg didn't do anything so i took the 290 mcg and the first day was good but each day after that the "results" went down and the gas pain and the bloating went up and every day i felt like i was filling up with fluid-- primarily in my transverse colon--which i just couldn't get rid of. very painful.

good luck to you with the two pills--hopefully they'll help...


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## razzle5150

well my update , didn't work , I will try again later , I had to edit this post . I was confused about another med


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## allura24

Razzle, I'm so sorry it didn't work out for you and I hope you have a quick recovery. I am so appreciative that you and others on this board shared your experience honestly. These reviews have helped me decide that this drug is not for me so I'll stick with my Phillips Colon Health and herbs while I wait for a better solution.


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## RailFan

Another follow-up. I took my one-and-only dose of this medicine Thursday, January 31st. By the following Monday (February 4th), I found myself dealing with stabbing gut pain. As the week progressed, the pain moved... slowly... from top-center abdomen (around the stomach area) over to the right (my right), and then to its current location, which is right around the belt buckle area. Last Thursday (Feb. 7th), the pain was so gripping and so bad that I could barely walk. Every step I took caused a huge, gripping pain, like a muscle spasm.

Today marks one full week of pain. The pain is less intense now, but it's still there. My constipation is still very real, too. I'll be reporting this to my doctor later today. I'm headed over to see my therapist in a few minutes, and I'll be letting him know, as well. I've had constipation be so bad that it's caused pain before, but never THIS much pain.

Stomach pain is a noted side effect of this medicine, but I'm not sure what they really mean when they say "stomach". Stomach, as in the actual stomach, or stomach, as in the general abdominal area?

What a mess.


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## Bonzaii

Hi everyone. Thank you for your post on your experience with Linzess. Thank you for posting about taking it at night, that made the diarrhea a little easier to deal with at first, but then it started to wake me up at night. Does anyone know i they are ever planning on making an even smaller dosage? I am 5'2" and 105lbs and I feel like even the smaller dosage is too much for me. I have been taking it for about 2 weeks up until yesterday. I needed a day off from the diarrhea. I can't take it. Plus, my doc gave me a 30 day trial bottle and after that, I won't be taking it unless he plans to supply me with samples because my insurance doesn't cover it anyway. And it doesn't bring me enough relief to want to fight the insurance company for it.

I have found that whether I take it in the am like I am supposed to or at night before bed, my IBS C symptoms still come back by early evening. (Gas, bloating, pain.)


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## hotrod1821

My doctor gave me a sample of Linzess (290mcg) about 3 weeks ago. The first few days, I didn't notice a difference as I was still having severe stomach pain and bloating. By the third day, it felt like it was finally working and was able to go to the bathroom even though it was mostly diarrhea. Since then, I've had the diarrhea off & on, every couple days or so. I have noticed that anything caffeinated will trigger diarrhea after I've taken my pill in the mornings. And unfortunately, this usually lasts throughout the day. Other than that, I have had great results with Linzess and I'm sad that it's such an expensive drug (which insurance doesn't cover







).

Hopefully you can get your situation straightened out. It may just take awhile for your body to get used it.


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## Rue

On the 145 dose and taking in the morning half an hour before breakfast. Today is day 9. I have had pain and bloating and pretty much just water coming out every 2-3 days. It will be a sudden urge and then not a lot comes out. Still feel like I need to go. Completely bloated and backed up.









Edit... Just talked to my GI specialist and she doesn't want me to give up on it just yet. So I am to take the higher dose starting tomorrow.

Edit... First day upped to 290 and this bloating and heaviness is pretty miserable (I'm a thin person and I look like I'm pregnant today). Took it six hours ago and all that came out just a few minutes ago was water, nothing even a little bit solid. I wouldn't even care if it was diarrhea as long as something was coming out and the pain was gone.


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## stressedmess

Rue, I had the same problem as you when i first started with linzess. I had that pain and bloating. My suggestion to you is to try to take it about an hour before you fall asleep and see if it works first thing in the morning. That way you can sleep through all the bloating and pain. That's what i do and it works well. I can't say it makes my BM any less watery but like you said...i dont care if it's diarrhea as long as i go.


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## Cappy

I have been on Linzess for just a day less than 1 month. It had been working great. But two days ago the cramping returned unexpectedly. The only thing I can think of as a reason for this is my anxiety about a surgery I am scheduled for in a few days. Otherwise I am doing nothing different. The surgery makes me anxious because the antibiotics and pain meds I get when I have this procedure always causes the ibs to flare terribly.
I hope that is the reason for the Linzess sudden ineffectiveness. It has done such a great job up until now. Has anyone had Linzess stop working suddenly like it has for me?

Steve


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## ebolus101

Hey everyone I was perscribed Linzess 290 at first, but after a couple of days of just constant D and watery bowel movements I was lowered down to 145. The lower dose worked amazingly but today about 7 days after starting this dose it has lost it's "umph" and I had to really force liquid/semi solid stuff out. Is this just my body getting used to the linzess? Also does anyone know if linzess speeds gastric emptying?


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## amynh88

I have gastroparesis and chronic constipation. My doctor put me on Linzess last week and I took a look at these reviews to get an idea about what other people experienced. I had a lot of similar side effects.

The first day I started it I took it at 12:30pm. 30 minutes later I had the chills and couldn't seem to get warm. An hour and a half later I still didn't have a bm and felt very light headed and sleepy. 30 minutes late I had my first bm and it was normal in the sense it was difficult to pass then 10 minutes later I have very watery diarrhea. I was stuck in the bathroom for 10 whole minutes during this episode. 20 minutes later it happened again, stuck in bathroom 10 minutes straight. I ended up making a visit every 20 minutes after that. Around 5pm I had stomach pain, was very tired and had a bad headache. I tried to keep drinking water but was nauseous. I think it made me dehydrated. I also had very loud gurgling gas pains.

I called my doctor and they said this can happen when you first start it and are really backed up. So I tried it again 2 days later, I had to wait because I work and where I sit at work isn't anywhere remotely close to the bathroom. This time I tried it before bed. I saw that others suggested doing that. I went to bed at 11ish and woke up at 1 and it all played out the same way as before. It kept me up almost all night and I feel tired, achey, headache, just awful.

I think there are too many unpleasant side effects to take this on a regular basis. I wish they had a smaller dose, I took the 145mcg.

I think this is a great way to cleanse completely but it can make you dehydrated and keep you in the bathroom for hours. Not ideal.


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## kigo

Good to see feedback on this medication. It helps me to know what others are experiencing. Been on it for month now. I had six pound weight gain in first week. Was hoping it was fluid and mostly it was. I always read PI on any Med and was a bit concerned that I was alone in the bloating and weight gain. I even stopped taking it for a few days and stomach was flat again. Pretty much in observation mode now. Will update Dr in next week or so. Since this is one, if not the, last resort Med for me, not sure what will come next.

This Med is only one that has relieved C. It works some days and not others. When does work, it's with six or so trips to bathroom over course of half to one hour and starting within few hours of taking in morning. Dr and PI say take 30 minutes before breakfast on empty stomach. For me, doesn't matter if I take with or without food since get same effect either way. After that bathroom time, little problem for me later in day. Between jobs now, so not sure I can chance taking this if working since when it hits its urgent and time consuming. I may use it intermittently ... like on weekends or when C is most severe. Just would have to decide if the bloating and water retention (even with taking 90 + ounces of water daily) is tolerable. Jury is still out but less than optimistic.

History
-Chronic severe C. 2 colon surgeries in last five yrs.
-Sigmoid and another piece of colon removed and rectopexy to remedy rectal prolapses. 
-No obstructions or diverticulitis, but have small rectocele per recent dynamic MRI and ultrasound. No surgery needed. 
-No gluten or lactose allergies. Tested negative on both.
-Have had both biofeedback and physical therapy (including internal and external rectal work) which helped some... more than most things. 
-Have had SIBO test which was positive and treated with antibiotics. This definitely helped with bloating. Followed this up with prescribed probiotic VSL (heavy duty and expensive, but OTC through pharmacist ) to replenish good bacteria after antibiotics. Long term VSL not continued because no effect on C for me. 
-Have taken meds and other things with little or no effect: zelnorn, amitiza, different probiotics specifically for C, stool softeners, Magnesium, FODMAP diet which helps a little with pain, various fiber supps Miralax, benefiber, metamucil, acacia senegal etc including various combos of them, enemas and suppositories which sometimes help a little, but mostly enemas don't even come out. 
-Next steps per my diligent Dr. are allergy testing although allergies unlikely since so hives or breathing issues with food. Tests for intolerances not clinically validated yet according Allergy based medical societies (different results from different labs using same samples and false positives resulting in unnecessary food restriction which could impact nutrition - labs tested include those used by alternative docs and pharmacists.) Still may do blood and stool intolerance testing on my own, not as diagnostic, but as starting point for trying elimination diet (again). 
-Last resorts per Dr are interstim implant then more surgery if interstim not successful. Doing nothing is not option because of incontinence related to severe C.


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## rogerlig

Linzess worked better than I expected. "Relief' within two hours on the first day (higher dose). Been over a month now, and still working very, very well. I'm actually quite impressed. It's worth the $85 per month (and that's with Medicare). I can't imagine how expensive this would be, uninsured.


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## mmchawley

I started Lizness back in the early part of April (the lower of the two doses) and had to stop after a few days. I have IBS-C but the drug gave me such horrible diarrhea and cramping, and I was in the bathroom multiple times a day. I went off the drug and tried to start it back up again, with the same results. It is frustrating for me, because I thought it would really help with my symptoms, but it took them to the complete opposite end of the spectrum and that doesn't work for me either.


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## Hazel Jane

My doctor gave me the 290 mcg dose to try, and I just discovered that this dosage is not approved by the FDA---only the 145 mcg dosage is approved. So, I'm wondering why many of us have been given the un-approved dosage. It seems like a lot of people have had unpleasant side effects. I just tried my first 290 mcg pill this morning, before realizing it was not approved by the FDA, and am already experiencing pure diarrhea. Why has Linzess sent the unapproved dosage out to so many doctors? I read that it wasn't approved because it didn't seem to be more effective, but it could also be more dangerous--obviously. I hope that other people will ask their doctors about this because it's quite troubling to receive something not approved by the FDA.


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## DrMom4two

I have started on Linzess as well. I was first given it about a month ago when my IBS-C started to act up. I have had IBS-C over 25 years. I can distinctly remember because I was planning my wedding when it started. Winter of 1984. When I was on Fluoxetine for my PMDD symptoms the IBS-C didn't seem too bad. I had a few bad episodes but nothing I couldn't handle. I had to go off Fluoxetine because of long term side effects. It was causing frequent migraines and restless leg syndrome. Now my IBS-C is back with a vengeance. Last month the doctor started me on Linzess 145mg and nothing happened just increased the stomach pain with the bloating and gas. He took me off it and scheduled a colonoscopy which I went for.They found a polyp, erythema {inflamed patches) & friability (easily bleeds) in the cecum. My intestines are also twisted which is why I get so constipated. He had me take a laxative and high fiber diet every day. Well it didn't work again only went very little. SOOOOO he put me back on the Linzess but double the dosage. I take them in the morning since it has to be on an empty stomach. The cramps starts along with the bloating and gas. I got diarrhea from it but didn't empty out. I know I have to give it awhile so I am trying to be patient. However I am going on a cruise soon and I don't want to have an accident. I only wish I could just relax and not worry so much. I know this is half the problem.


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## riisey007

My doctor gave me samples of both dosages over a month ago. I am very pleased with Linzess. I suffer from calcium issues due to over usage of enemas so I was glad to see this product. I was skeptical at first but decided to take anyway. I have tweeked it some due to the effects seeming to wear off. Instead of taking it on an empty stomach 30 minutes prior to eating. I take it around lunch time and after I have eaten some portions of my food. Within an hour it sends me to the bathroom. Yes!! It usually sends me at least 3 times but that is ok with me, I was severely constipated before Linzess and it feels good to go to the bathroom. The Linzess gives you time to get to the bathroom because your stomach starts growling and you know you have around 5-10 minutes to find a restroom. I am appreciative of the medicine. If it is not working for you or if its working a little to well then just tweek it, it is your body. Don't give up!! I must add I started with the low dose and made my way up to the high dose.


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## JustNancy

I'm wondering if anyone here has takenit longer than a couple of weeks. My doctor did say I might have diarrhea for the first few days, but eventually my body would normalize again. From reading these posts, so far no one has taken long enough to see if your body really does adapt. I started it yesterday, but having been told by my doctor what to expect, I was ready for the frequen trips to the RR. It's a welcome relief after not being able to go and being off for the summer helps too!

So, if anyone here has taken for more than a couple of weeks, maybe months, d like to hear from you.


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## DrMom4two

Hi JustNancy

I am still on the Linzess 290mg dosage. The diarrhea is no longer severe. I do have bouts of diarrhea sometimes but the most part I go every day normally. The problem I was still having was bloating and pain every morning especially once I started eating my breakfast. I usually have a BM within an hour of eating and the pain and bloating would remain throughout the day. Taking Advil helped but not enough. The doctor had me try hyoscyamine sulfate to help but I quit after a few days. I had trouble urinating which is a side effect. I went a few more weeks hoping things would settle down but it didn't. As of last week he has me trying the Linzess with a probiotic (I use Align) along with a no dairy diet. I thought the no dairy was helping but today I am bloated and in pain again. I don't know having my period is affecting things. I will try to keep you up to date. I have the see the doctor next week so I will see what he suggests.


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## mwilson

I've been taking Lizness for about 2 weeks now, and also Flax Oil in a smoothie every morning. I am going more frequently now, but if I don't take the Flax Oil I usually don't get any results. Today I am feeling a side effect from the Lizness. I am very bloated and my stomach is sticking out like I'm 6 months pregnant. I am misreable and debating if I want to stop taking it and just do the Flax Oil. Is anyone else having this problem?


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## DrMom4two

Hi

I am still on Linzess 290mg and have been for several months. Linzess finally had me start going regularly. I also had problems with it including the gas and bloating. I still get days with bloating and gas but it depends how well I go. Some days are better than others.

The biggest problem I have is the stomach pains especially in the morning. Some days I am in so much pain I have cold sweats. The doctor has been having me try several things but so far it hasn't helped much. First he had me try hyoscyamine in addition to staying on the Linzess. Hyoscyamine is used to control symptoms associated with disorders of the gastrointestinal (GI) tract. I went off it after 3 days because I didn't like the side effects. The worst was trouble urinating. Not good.

Then he had me try the probiotic Align still staying on Linzess and no dairy for two weeks. Well, that didn't help either. Pain still there.

Now he has me on imipramine with Linzess. Imipramine is an anti-depressant. Anti-depressants have been known to help with IBS-C because of its calming effects. As you know symptoms of IBS are worsened with stress and I am going through a lot stress now. Years ago I was Fluoxetine and it actually helped with the IBS but unfortunately after being on the drug so long I started having side effects (migraines and restless leg syndrome) so I had to go off it. He wants me on the drug for at least a month but it is not getting better. Since starting the drug I had days without going then I got diarrhea for 2 days along with a migraine then I can't go again. I am hoping it straightens itself out soon because I really want to just give up on it. At least when I was just on Linzess I was going every day. I would just have to live with the pain. Sorry this is so long.


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## gacowgirl

Hello everyone. I am new here. I developed IBS-C after treatment with the biologic Actemra for my rheumatoid arthritis. Along with the IBS, I also have gastroparesis. After trying Reglan an Amitizia, VSL-3, Miralax and my own ineffective trials, my GI put me on Linzess 290. After three years of a completely nonfunctional GI system, I am delighted to be havig bm's every day. I came to this site looking for other people's reaction to the Linzess. I consider myself blessed that it is working so well for me. I take my Linzess in the early morning with two mugs of coffee with half and half cream. I also drink a glass of tea. I take it as the same time as synthroid and omeprazole. Almost to the minute, in two hours I will have a bm. Currently those bm's are watery and smelly but there is no more horrible pain in my stomach (full of food because it wouldn't empty), no more severe GERD and no more bloating and stopped up bowels. I often have 4 such bm's over about an hour's time. Sometimes a little crampy after the first one but oh so much better than being constipated. My understanding is that fat affects the speed and efficacy of Linzess. For you folks that the med is not working, maybe try taking it with something with some fat-smoothie, milk, or like me, the coffee. GI told me the coffee is good for bowel because it stimulates contractions. He also asked that I honor any small attempt by my bowel to work by sitting on toilet in the hopes of a bm. I have had two bm's outside the normal times in the three weeks I have been on Linzess. I didn't do a cleanse-was actually quite stopped up when I took the samples. After only three days on the samples, I had the Rx filled. So relieved and so very thankful that finally there was something that worked for me CONSISTENTLY. The hour of diarrhea is not fun and is often not convenient, but so far I am managing. The one day I knew I could not stay in the bathroom, I held the Linzess, didn't eat and took the Linzess about 12:00. Waited 30 minutes and ate lunch. Still worked but not as well. I don't know if the watery bm's will improve, but I'll take that condition instead of the pain, bloating, vomiting, bowel impaction and cramping and inconsistent bm's of before. Just wonder if anyone else is taking the Linzess like I do. Wish I was more concise. I don't care what the copay is for the Linzess. It's a life saver for me. I also have early congestive heart failure and fatty liver syndrome, both from the years of NSAIDS for RA. Would love to hear from anyone else. There is a lot of freedom in being able to talk to people with the same problems. Thanks to all and hope your day is super.


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## mailemaikai

several months have gone by and my bowels are still not normal, ct scan with contrast shows nothing wrong, I take linzess now about once a week , the pain in my stomach with cramps is unbearable when I take this but it helps push the waste through that do not come out any other ways , I know there is a problem and not a mental reason why I stopped going poop all of a sudden I have been normals then boom all of a sudden im horrible in pooping I take strong probiotics 2 cups pure aloe juice drink water eat fantastic exercise maintain a happy mood and yet I still have problems in this area now, so this drug has been a lifesaver on days I just cant go, I gues turning 40 this was my birthday present, maybe they can find a cure or a reason why this has happened to me, but for the meantime this is a lifesaving drug.


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## gidgett

hi everyone, I'm new to this but I thought I would share my current experience with Linzess since there still isn't too much info out there. I had a run-in with Giardia, which over a period of months went undiagnosed and caused my stomach and intestine to stop working on their own. I would eat and the food would pass through the esophagus and then just sit in my stomach. I was completely full from stomach to anus with food and waste just sitting there. Any movements I would have would only take place because there simply wasn't any room left in my tract. (Now I am a person who spends most of my life in the gym training for body building, I am in great physical condition and rely on nutrition and healthy eating habits, including 72-132oz of water a day.) I had horrible bloating, pain discomfort, living with that awful feeling of your waste stuck in your anus. I would suffer trying to force something, anything out but no luck. This went on for 5 months. Finally I had reached the point of being so sickly and malnourished and in so much pain a CT scan was ordered thinking I had appendicitis, then I was sent to see a GI. After all the nonsense he gave me a sample of Linzess, 8 days, took each pill in the morning. After the first 4 days I had a movement on my own!!!! I woke up and HELLO I had to go!! I'm sorry but I cannot explain how wonderful of a feeling that was. Day 5 it turned into bad, bad diarrhea. Then on day 7 everything was again going well. On day 8 I had followed suit with day 7 and almost had a schedule. Day 9, (no more linzess, sample was over) and still followed suit with 7 and 8. Then from day 10 and on everything slowly started going back to the way it was before I started Linzess. On day 17 I began Linzess again the Dr had called in the Rx. I am on day 2 of this round and I am experiencing the bad diarrhea. I am not stressing or worrying I believe that once this "emptying out" passes all will be good again. I have not experienced any other symptoms with the diarrhea. my bloating, discomfort and pain have all diminished today, I went to sleep with all of that last night and this morning when I woke...all gone. My Rx allows for 3 refills, the Dr and I are hoping that after a month of the linzess "stimulating" my digestive system it will work right on its own again. I will post updates along this journey.


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## TravDevine

I just tried Linziss - for a week. It did seem to work to cause a bowel movement or 3 each day with some gas and moderate pain. I stopped taking it because it caused a headache in the back base of the head with soreness in the neck muscles and a shooting pain behind the ear. After 3 days off the Linziss the pain and headache went away. After a week I tried the Linziss again, in case the headache and stuff was from some other cause. Within an hour the headache was back so I quit Linzess again. Afraid in spite of it helping the constipation I just can't take it. I've been given Amitiza and have just taken the first pill.

I'm a male, 72 with COPD, GERD for over 25 years and pulmonary problems from 50 years of smoking (I cut out cigarettes over a year ago but still smoke a pipe). 2 1/2 years ago I have a bad case of diverticulitis - emergency room and all. After I kept having problems but the Gastroenterologist kept saying if I didn't have a fever it wasn't a re occurance of the diverticulitis and offered no help. Finally I faxed him a list of symptoms, the dietary changes I had made and told him I either needed some help from him or a referral to another doctor. He finally paid attention, hence the Linziss after a week of nightly Mira-Lax to empty out the system.

Don't know what results I will have or not have from the Amitiza. Glad to find this forum as my frustration working with the Doctors alone has grown to the point that I just don't trust them to be anything except pimps for the big drug companies.


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## erwin1

I have been on linzess 145 mg for several weeks and am experiencing a dull throbbing pain in the lower back on my head almost daily..for several weeks., also shooting pain in the back of my head, but thought it was a migraine, but now realize that headaches are also a side effect. and may be a side effect of linzess. Besides no other side effects .


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## jl51

Hi - lots of info here about Linzess, so I thought I'd give my two cents.

Began Linzess last week just after a colonoscopy (my first) and, yes, I too had diarrhea at first. Not sure if this was just because of the Linzess or because of the colonoscopy? I had started taking the lower dose. After 1 day, the diarrhea had disappeared. Kept taking Linzess for 1 week. Then for 6 days, no BM whatsoever. So had the Linzess stopped working?

Today, I tried a higher dose. Had 'bubblegut' all day, then a BM tonight.

[Note: you have to take it 30 minutes before your first meal of the day, so I'm not sure how people take it at night?]

History: constipation since 1977, spastic colon all throughout 80s and 90s, diagnosed with IBS 1992, chronically worsening IBS-C to present. First doctor visit for this problem (since 1992) was last week. I guess I'm good at waiting...









Previously found relief with: deliberate milk consumption, stool softeners, probiotics, laxatives, anti-depressants, fiber therapy, avoiding large amounts of raw veggies, extra water, increased walking, the FODMAPs diet. All would work for a few weeks or months, then didn't work for me any longer.

I will keep the higher dose of Linzess for now. I hope it keeps working. I hope it's covered by insurance. Good luck to everybody out there.


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## Benzo Belly

Been seeing commercials for this drug and wondering about it. Thanks for the review!

I'd personally be too scared to try it for fear of side effects, but that's just me. As much as I hate constipation, I think I hate diarrhea/upset bowels even more. That hot, sick feeling that accompanies diarrhea is too much for me. Starting with the lowest effective dose would be well-advised IMO.


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## aspyn

Hi all, new to the group and thought I'd contribute. I just started Linzess, but before I get into that, a little history about me. I've had stomach problems since I was a baby and always remember having a "bad tummy" since I was a kid. I had alternating constipation and diarrhea and was diagnosed with IBS in high school. With all the trouble BM's, I developed some super fun hemorrhoids, and discussed some options with my doctor. So in 2009 I was put on Amitiza (higher dose). I had a lot of diarrhea at first but after a few months (I put up with a lot because I was beyond sick of the deluge of problems by this point) it normalized and I only had occasional diarrhea. Very rarely constipation. I did, however, still have other side effects quite often (mostly rapid heart rate and nausea) even if I ate with my meds. It seemed random. More recently I've had so many bowel issues I just got fed up with it and have started pursuing more help from my GI doc. I put myself on a low FODMAP diet and have had significant improvement in my bowel distention, gas, and terrible pain, which is great. And recently my GI doc mentioned Linzess as being better than Amitiza since it's bowel only so I wouldn't get systemic symptoms and there is also less of the gas and discomfort than with Amitiza. I've been on it for 8 days now. I take it first thing in the morning and wait quite a while to eat. I do get gurgly tummy and a couple bouts of diarrhea per day at this point, but it seems to be slowly improving (I think I have a high threshold for the diarrhea since I was on Amitiza for 5 years). I'm hoping it resolves to regular BM's so I can stay on this as I don't really want to have to go back to the Amitiza. I also don't have to eat with this one and it's only once a day. Oh, and i'm on the lower dose right now.


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## Mommy11837

I've had IBS most of my adult life (47yrs now). I would say it was IBS-A for must of that time but the last year or so it is mainly IBS-C. I had read this thread about Linzess and decided to ask my gasto dr. about it during my recent visit. She gave me samples of both doses and said I would need to figure out my dosage. Unfortunately only having 8 pills each doesn't make it easy! I decided to start with the lower dosage and take it every other day so I could go a full 2 weeks taking it. I started on Friday, May 23rd and as of today have taken 6 doses. I've pretty much had the same result each time: VERY loose bowel movement within one hour of taking it. I've had a little bit of gut gurggle but have not had any cramping. Trying to decide if I should call and ask for a prescription to continue it. Not happy with the sudden urge/loose bowels but at lease I'm going! Has anyone truly had luck with this drug making them regular?


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## aspyn

@mommy11837, have you taken any meds like this before? When I was on Amitiza it took me 3 months to totally "normalize" on the meds, although I still had side effects and some diarrhea even long term (which is part of why we are trying the Linzess). My guess is if these types of meds are new to you it may take longer to normalize. It sounds like you're tolerating it pretty well so far. I've been taking it for a couple weeks now and am noticing gradual improvement with the diarrhea and urges to go and am hoping it will normalize within the month. I find I do better if I wait more than the recommended 30 minutes before eating. I try to wait at least 45 min or an hour. I went ahead and asked my doctor to order the prescription and I have a follow up in July to see how I'm doing then and then decide on how I want to move forward. From what I've read online with other people it seems to take at least a few weeks to get used to the meds. Good luck to you!


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## annie7

i agree with aspyn.









one of my gastros did some clinical trials on linzess and one of the things he found was that the longer you wait to take it before eating, the less of a D effect you'll have. he recommends people start trying it by taking it an hour before eating. you can adjust from there--we're all so different in how our bodies react to meds. and like aspyn said, it can take a while to normalize. good luck!


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## Stephanie33

Does anyone have delayed gastric emptying or worsened gastroparesis from this drug. It feels like food is just sitting in my stomach and also water is staying too long in my stomach. I have bad indigestion, but would have to quit the drug for at least a week to tell whether its the drug or just my worsening condition, and lose the progress since it takes time to work. oh well. I skipped a day and still had issues with bad bloating and indigestion and esophagus and stomach pain. It was a little better.

I read that amitiza can delay gastric emptying, but have not seen it listed for Linzess.


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## Mommy11837

@Aspyn, no I have never been on any meds to treat constipation, just anti-depressants which I no longer take. I did call gastro doctor as my samples are done and I'm now doing another 30 day supply. Still taking it every other morning and I take it very early so I probably don't eat for at least an hour to two hours. Still no other side effects other than loose bowel movements but I can live with that as it's definitely better than being constipated! Really hoping to see some normalization soon!


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## aspyn

@mommy11837 - I'm glad to hear you're still tolerating it! I filled my 30-day subscription to continue trying it, so I think I'm on mid week 3 now. I still have diarrhea pretty much daily (I think I've had 2-3 days without it) but otherwise I feel like I'm seeing gradual improvement with less urgency and fewer BM's (2/day average now, down from when I first started it).


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## Stephanie33

Has anyone experienced benefits from this Linzess and/or adverse reactions for a week or more after stopping it? I thought that the effects of it would be gone once it is out of the intestines? That is how it works right? Maybe some of it is still trapped in my intestines. Or is it one of those drugs that alters the receptors in the body long term and has effects for a long time after quitting? I hope not.

I have been off of it a little over a week and my indigestion/feeling of slow stomach/not enough acid continues, and my actual passing of some stools ,though not everyday and not enough continues as well.

I was on it around 2 weeks or a little more.


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## annie7

Stephanie--no i've never experienced any linzess side effects or adverse reactions once i stopped taking it. when it first came out i was on it for a little over two weeks, then quit taking it because it had stopped working for me. since then i've gone through several bottles of it, taking it on and off for varying lengths of time, experimenting with it, etc trying to get it to work.

and yes you're right--it's effects are gone once it's left your colon along with the stool.

maybe you've already ready this. recently another poster asked about linzess half life and Kathleen answered and explained it all --thanks, kathleen







:

she said in part--go to the link below for her complete explanation:

"It does not get into the blood stream. It stays in the gut.

It is broken down into an active metabolite (which also effects the gut) and that metabolite stays in the gut.

So if you have a transit time of 3 days, it takes 3 days for the stuff to get out of your gut as it travels with the feces.

...half life is all about how long it takes to get the drug (or active metabolite of the drug) out of your blood. If it was NEVER in the blood you can't measure how long it took to get pulled out of the blood by your kidneys or liver..."

there's more here:

http://www.ibsgroup.org/forums/topic/175361-linzess-linaclotide-half-life/?hl=%2Blinzess+%2Bhalf+%2Blife

my own experience with it is that it gets out of my gut the same day i take it. for me, it's effects definitely do not carry into the next day. but that's me. we're all different in how our bodies react to drugs.

and no i've never heard of or read anything about it altering receptors in the body long term like you're talking about...

you can always call the pharma at the 800 number on the linzess website and ask them these questions directly...i've heard from people who've done this that they are very helpful and informative.

so sorry you're having problems. ...hope you feel better soon.


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## Displaced

I started taking Amitiza a few months ago, after resisting doctors' recommendations for several years, and to my surprise it actually worked fairly well-for a while. After a couple of months it seemed to lose effectiveness, so the doctor switched me to Linzess 145. Although the response was different than with Amiitza, it, too, produced results. No "miracle cure," but something. Well, the pattern has definitely shifted, and it seems to be a week or so between BMs, and sometimes a bit of diarrhea associated with it-nothing too horrendous, fortunately. This could be just the usual cycle that happens when the bowel has been backed up, rather than a side effect of the drug.

I go back and forth about taking fiber supplements and realize that taking them for a few days then changing my mind probably isn't making any difference. I either need to stick to it for an extended period or forget it. I also take Align probiotics, recommended by the doctor, but can't determine whether or not they help. Since they probably aren't doing any harm, I'll continue with them unless directed otherwise.

I was also on an antidepressant for about five years for "stress relief," since stress is said to be a factor in constipation. It probably helped initially, but I concluded that I didn't want to remain on this kind of drug the rest of my life, so I tapered off earlier this year. However, in my more desperate moments, I have wondered about trying that particular drug or another one again.

At any rate, I'm very disappointed about the results of both Amitiza and Linzess and not sure what other options I might have. If things don't improve, I'll probably contact the doctor again in a few weeks. I don't feel a lot of pain (normally), just varying levels of mild to moderate discomfort while I wait for things to happen, but I know it's not healthy to have this blockage.


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## annie7

Linzess comes in two strengths--145 mcg and 290 mcg. if the 145 isn't working now for you, you could try the 290.

there are various ways of tweaking linzess--some people take it with miralax and say it works better for them that way. also, the closer you take it to eating, the more of a diarrhea effect you'll get. the directions say take it a half hour prior to eating. i found if i take it with a warm breakfast with some healthy fat in it, i get quite a D effect. a little too much, perhaps. you could try taking it 15 minutes before eating instead of a half hour before and see if that helps...

linzess is very unstable. make sure it hasn't been exposed to light or humidity. and also make sure your pharmacy gives it to you in the little white bottle, sealed, and with the little dessicant packets inside that comes directly from the manufacturer. sometimes pharmacies will put it in their own bottles which the manufacturer advises against doing--it degrades linzess' quality.

also--amitiza comes in two strengths as well--8 mcg and 24 mcg..

because these meds are bowel regulators and not laxatives. often neither linzess nor amitiza will work well if you're really backed up. if that happens it's best to do a clean out and then try taking it.

good luck....hope you can find some relief...


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## flossy

I wanted to get a prescription for Linzess but after reading a lot of these posts it doesn't sound too promising whatsoever..... (Hmmmmmmm.)


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## annie7

well, we're all different in how we react to medications, supplements. YMMV. and there have been many linzess success stories--i've read them, both here and on another board i read and my gastros have both told me it works for a lot of people. often the people who do have success with something never come back to report it worked for them because they are out happily enjoying their lives.









personally i have never let anyone else's experiences with a med or supplement affect my decision to try it. my feeling is, if i don't give it a try, i'll never know if it will help me or not. so i try 'em all..lol...with an open and positive mind..


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## Kenny & White Tiger

annie7 said:


> well, we're all different in how we react to medications, supplements. YMMV. and there have been many linzess success stories--i've read them, both here and on another board i read and my gastros have both told me it works for a lot of people. often the people who do have success with something never come back to report it worked for them because they are out happily enjoying their lives.
> 
> 
> 
> 
> 
> 
> 
> 
> 
> personally i have never let anyone else's experiences with a med or supplement affect my decision to try it. my feeling is, if i don't give it a try, i'll never know if it will help me or not. so i try 'em all..lol...with an open and positive mind..


Yea, That's my way of thinking, though I had to be nudged and nagged quite a bit to try this medication.

I've mentioned it like, er, 3 times now, it wasn't for me unfortunately, just turned straining into ah...urgency, like explosive urgency, and I didn't like that, I went through that enough after having my gallbladder removed! I'd say if like, you're the sort who never goes, then this stuff would be top notch, but if you're going a lot already and just need something to regulate/ cause less movements, this isn't it for that.

I just couldn't tolerate this, plus I'm edging more and more away from these kinds of medications, trying natural stuff&#8230;so far hasn't helped any more or less than prescription drugs, but there's still a lot I haven't tried, so I just try to remember that when I'm not TOO discouraged.


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## flossy

annie7 said:


> well, we're all different in how we react to medications, supplements. YMMV. and there have been many linzess success stories--i've read them, both here and on another board i read and my gastros have both told me it works for a lot of people. often the people who do have success with something never come back to report it worked for them because they are out happily enjoying their lives.
> 
> 
> 
> 
> 
> 
> 
> 
> 
> personally i have never let anyone else's experiences with a med or supplement affect my decision to try it. my feeling is, if i don't give it a try, i'll never know if it will help me or not. so i try 'em all..lol...with an open and positive mind..


I hear what you're sayin' - and I won't pretend I read every post here on this particular thread, but I read a lot of 'em - but wouldn't it make sense if a lot of the posters here are saying it's too strong/they didn't like it it just might reflect on your opinion of it too, sometime in the future?

Personally, I always try to read reviews on what I'm buying, especially on stuff I buy on Amazon.com (whatever it may be). As long as the reviews are real and not paid for by the manufacturer, it's nice to know what others think.

After reading a lot of the reviews here (and elsewhere) on this particular med I'm in no hurry anymore to get a prescription for Roto-Rooter - OOPS! I mean Linzess.









....And if I do get a prescription for it I will probably use half a dose the first couple of weeks (cut pills in half).


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## annie7

yes i read other posters' views on linzess but no, it didn't faze me one bit. i couldn't wait to try it anyway---but--hey--that's me.

i'd been following the clinical trials on linzess all along and when i first found out it was finally approved and available, i told my one gastro about it and was first on his list for samples--lol. took forever for him to get them in. so in the meantime, while i was waiting for his samples to come in, i posted that linzess thread here on the board to tell people it was available. i was just so happy. and i followed the linzess threads on the other board i read as well. but that's me--that's how i am about new drugs--eager to try them. hope springs eternal. i just would like to feel better....50 years of this is way too long..

and yes i agree with you--it does make sense that these reviews could affect some peoples' opinions......

about reviews--oh i do love those reviews on amazon. did you by chance see the amazon reviews for the haribo sugar free gummy bears? totally way too funny . and over 800 reviews now...talk about your roto rooter--lol... now maybe that's what i should try...









http://www.amazon.com/Haribo-Gummi-Bears-Sugar-Free/product-reviews/B000EVQWKC


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## kc99

Hi, regarding flossy's earlier post: just wanted to comment that Linzess typically comes as capsules, so, there's not an easy way to go less than 145 mcg with that. Though I guess you could always ask doctors/pharmacists whether there's a way to get a lower dose or a tablet or liquid. I've run into this problem myself, with other meds I was hoping to cut in half.


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## aspyn

I talked to my NP about this at my follow up last week because 3-4 months later I'm still getting too much laxative effect. You cannot go below the lower dose since there's no way to cut the pill, so you're stuck with either 145 or 290 and no lower or in between.


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## annie7

i did read on another board how one woman managed to split her linzess capsule. although not a particularly easy thing to do, as kc said.

she bought empty capsules at her pharmacy. then at home she opened the linzess capsule, emptied it out on a sheet of paper and divided the contents in half and then put one half in one empty capsule and the other half in the other.

you don't want to do this under very humid conditions because humidity can degrade the drug.

to me it seems you couldn't be sure of really getting an accurate half dose that way but she said it worked for her like this and was very happy with the results. somebody else then posted that she tried this and it worked for her too.

also--the longer you wait to take it before eating--like an hour instead of a half hour--the less of a D effect you'll get. some people have had good success taking it on an empty stomach before they go to bed.


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## Thisisaproblem

Just began taking Linzess after lifelong off and on chronic C. Day 1 (already backed up) - 145 mg, nada. Day 2 145 mg + one dose of miralax + added Philips colon health at dinner - very little, Day 3 switched to 290 mg because I have a road trip tomorrow and Sunday and I am miserable - minor D. Will continue to post. No measurable pain at all.


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## Thisisaproblem

flossy said:


> I wanted to get a prescription for Linzess but after reading a lot of these posts it doesn't sound too promising whatsoever..... (Hmmmmmmm.)


I agree. The website says it helps 1 in 5. Not too promising and I don't think many on this thread say it worked for them.

To update my story: I stopped taking it Sat because I had to take a 2 day road trip and couldn't take a chance. Also, in reading the posts here, it seems to take longer when you are already backed up which I am. So I took a laxative last night and I am going to start again tomorrow and see what happens. I am traveling internationally next week (which as you know is quite miserable when constipated so I am hoping this helps. Also continuing to take the Philips colon health and maybe mirilax.


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## Thisisaproblem

Took the 290 today. Good results and no pain. Afraid to leave the house. Managed to run out for 1/2 hour but I am not running to the bathroom either. Also took miralax this am.


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## Thisisaproblem

Took a 290 this am. Some D. No pain. I need to decide soon which dosage to ask the doctor to prescribe. I am probably going to ask for 145 because I could always take 2. My fear is getting backed up during international trip (next week) because once I am backed up, it doesn't seem to work at all. But obviously having D is a problem as well. Tricky situation.


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## Thisisaproblem

Took a 145 today. No problems so far but I have been spending a lot of time at home. I have a doctor's appointment today I have to leave which is why I took the 145. So far I haven't had any BM's later than 10 or 11 but wanted to be on the safe side. I am going to ask the doctor to prescribe 145 and see how it goes. I am a little concerned because I am going to Italy next week and with time changes and all I am not sure what time to take the pills. I need to make sure we can go out and about with any worries. Bathrooms in Italy can sometimes be hard to find.


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## Thisisaproblem

Not too happy the last few days. Stopped working as many others have said. Took a lax to clean out and I will try again but I am very discouraged. Still taking 1x a day miralax.


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## MissBellyPain

Reading through the pages of reviews, I'm surprised to see that both the lower and higher doses of Linzess have given most of you diarrhea. I have been on Linzess 290mg for 3 days, and the 145mg for a week prior. I have had constant stomach pain both before and during taking Linzess, so I can't tell if it's causing more pain, or things are staying the same.

BUT I have had zero diarrhea the entire time on Linzess. In fact, since starting Linzess, I've been able to finally go to the bathroom again. Yet they're still constipated, marble-like stools. I kind of WISH I was having lose stools... I think most of my pain must be coming from being severely constipated? I have noticed more movement-noises-gas, but no diarrhea.

So everyone reading these reviews, know that it won't cause EVERY person to be stuck in the bathroom with diarrhea...it didn't me!


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## flashy

9/12/14

I have been looking everywhere for someone who has a similar situation as me. I was prescribed linzess 2 months ago after a colonoscopy. I have taken it consistently everyday. I have had constipation all my life, to the point where I was impacted multiple times and had to go to the ER to get it out. I take it everyday and nothing happens except major bloating. About day 5 my belly is so swollen and all of a sudden I have cramps and extreme diarrhea. Anyone else have this issue with Linzess. Seriously, I bloat so bad it looks like I lost 10 lbs after I have a BM. I take the 145 mg now. Contemplating going back to Dr. for more help. When I get that diarrhea I want to take immodium just so I don't have to cancel plans I make with friends. Help.... Anyone...

9/28/14

So above was my previous post about how Linzess worked for me....Which it just didn't work. I decided to try something that is not necessarily medicine and I have gone everyday since I started, no diarrhea or anything. Mind you, I have tried everything. First thing was I stopped taking Linzess for 5 days......What I do now is I take 1 tablespoon of Raw apple cider vinegar ( with the "mother"....I got mine at Whole foods) in the morning and at night. I also drink a bottle of water with a little more than one dose of Miralax at morning and at night, and I also

take a 30 billion probiotic and drink plenty of water throughout the day. Now I sometimes go twice a day with normal stools. But I really go everyday. This was the answer I was looking for! This may not work for everyone. When it was suggested to me I rolled my eyes and said, "I am beyond all that stuff and have to rely on medicine now".

If you all are as frustrated as I was, just try it. You may have a little diarrhea the first couple days but it's not severe at all. After a couple days you will go regularly! TRY IT! I would be interested if anyone else tries it and has success. If you decide to let me know!!!!


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## flashy

Displaced said:


> I started taking Amitiza a few months ago, after resisting doctors' recommendations for several years, and to my surprise it actually worked fairly well-for a while. After a couple of months it seemed to lose effectiveness, so the doctor switched me to Linzess 145. Although the response was different than with Amiitza, it, too, produced results. No "miracle cure," but something. Well, the pattern has definitely shifted, and it seems to be a week or so between BMs, and sometimes a bit of diarrhea associated with it-nothing too horrendous, fortunately. This could be just the usual cycle that happens when the bowel has been backed up, rather than a side effect of the drug.
> 
> I go back and forth about taking fiber supplements and realize that taking them for a few days then changing my mind probably isn't making any difference. I either need to stick to it for an extended period or forget it. I also take Align probiotics, recommended by the doctor, but can't determine whether or not they help. Since they probably aren't doing any harm, I'll continue with them unless directed otherwise.
> 
> I was also on an antidepressant for about five years for "stress relief," since stress is said to be a factor in constipation. It probably helped initially, but I concluded that I didn't want to remain on this kind of drug the rest of my life, so I tapered off earlier this year. However, in my more desperate moments, I have wondered about trying that particular drug or another one again.
> 
> At any rate, I'm very disappointed about the results of both Amitiza and Linzess and not sure what other options I might have. If things don't improve, I'll probably contact the doctor again in a few weeks. I don't feel a lot of pain (normally), just varying levels of mild to moderate discomfort while I wait for things to happen, but I know it's not healthy to have this blockage.





Displaced said:


> I started taking Amitiza a few months ago, after resisting doctors' recommendations for several years, and to my surprise it actually worked fairly well-for a while. After a couple of months it seemed to lose effectiveness, so the doctor switched me to Linzess 145. Although the response was different than with Amiitza, it, too, produced results. No "miracle cure," but something. Well, the pattern has definitely shifted, and it seems to be a week or so between BMs, and sometimes a bit of diarrhea associated with it-nothing too horrendous, fortunately. This could be just the usual cycle that happens when the bowel has been backed up, rather than a side effect of the drug.
> 
> I go back and forth about taking fiber supplements and realize that taking them for a few days then changing my mind probably isn't making any difference. I either need to stick to it for an extended period or forget it. I also take Align probiotics, recommended by the doctor, but can't determine whether or not they help. Since they probably aren't doing any harm, I'll continue with them unless directed otherwise.
> 
> I was also on an antidepressant for about five years for "stress relief," since stress is said to be a factor in constipation. It probably helped initially, but I concluded that I didn't want to remain on this kind of drug the rest of my life, so I tapered off earlier this year. However, in my more desperate moments, I have wondered about trying that particular drug or another one again.
> 
> At any rate, I'm very disappointed about the results of both Amitiza and Linzess and not sure what other options I might have. If things don't improve, I'll probably contact the doctor again in a few weeks. I don't feel a lot of pain (normally), just varying levels of mild to moderate discomfort while I wait for things to happen, but I know it's not healthy to have this blockage.


Maybe try this. Helped me out a ton. i used to only have a BM every 8-10 days.....Here's my story

9/12/14

I have been looking everywhere for someone who has a similar situation as me. I was prescribed linzess 2 months ago after a colonoscopy. I have taken it consistently everyday. I have had constipation all my life, to the point where I was impacted multiple times and had to go to the ER to get it out. I take it everyday and nothing happens except major bloating. About day 5 my belly is so swollen and all of a sudden I have cramps and extreme diarrhea. Anyone else have this issue with Linzess. Seriously, I bloat so bad it looks like I lost 10 lbs after I have a BM. I take the 145 mg now. Contemplating going back to Dr. for more help. When I get that diarrhea I want to take immodium just so I don't have to cancel plans I make with friends. Help.... Anyone...

9/28/14

So above was my previous post about how Linzess worked for me....Which it just didn't work. I decided to try something that is not necessarily medicine and I have gone everyday since I started, no diarrhea or anything. Mind you, I have tried everything. First thing was I stopped taking Linzess for 5 days......What I do now is I take 1 tablespoon of Raw apple cider vinegar ( with the "mother"....I got mine at Whole foods) in the morning and at night. I also drink a bottle of water with a little more than one dose of Miralax at morning and at night, and I also

take a 30 billion probiotic and drink plenty of water throughout the day. Now I sometimes go twice a day with normal stools. But I really go everyday. This was the answer I was looking for! This may not work for everyone. When it was suggested to me I rolled my eyes and said, "I am beyond all that stuff and have to rely on medicine now".

If you all are as frustrated as I was, just try it. You may have a little diarrhea the first couple days but it's not severe at all. After a couple days you will go regularly! TRY IT! I would be interested if anyone else tries it and has success. If you decide to let me know!!!!


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## Displaced

I've been on the lower dose of Linzess for about three months and am seriously considering giving it up. I've already tried Amitiza, which initially helped but lost its efficacy, and have had issues with Miralax, which means I'm well aware there isn't much else available in terms of OTC or prescription medication. I have no idea whether Linzess is causing my frequent diarrhea or whether it's NOT working and the crazy incidents are my body's desperate attempt to evacuate, sort of like the dam bursting. I went, for example, from a a week of absolutely no bowel activity to about five days of what I call slow motion diarrhea: relatively solid BMs, but small, multiple times a day, never feeling like I was cleaned out, afraid to leave the house, uncomfortable. Along the way I had two incidents one morning of completely loose/liquid material, but that was over within about an hour. I still feel queasy, although so far today (almost noon), nothing has happened. Either way, I think Linzess is out for me. It's just causing too many problems.

I tried to get an appointment with the gastroenterologist, but his assistant said that since I'd been seen lately (several months ago), she needed to talk to the doctor first. I'm all in favor of not wasting time in the office if a bit of phone advice will do the trick, but will anybody listen to me? I've considered asking for a referral to a different practice. I know a new doctor wouldn't be able to pull something else perfectly effective/with no adverse effects out of a hat, but maybe he or she would be better able to offer some guidance. I know that our health system essentially forces doctors to see so many patients every day that they can only spend a few minutes with each one and that a long, detailed consultation is probably out of the question. I feel that I'm left trying to figure this out of my own and have come to accept that I'll probably have to live with at least some degree of problems and never return to "normality" unless some new drug comes out that actually works well for me. Very frustrating (probably for the doctors as well). Thanks for letting me vent!


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## Displaced

Is it OK to take Miralax along with a prescription med like Linzess or Amitiza? I've tried Miralax alone and never could find the right dose and frequency to help without tipping me over into the diarrhea side. I also had a scary incident in which I almost passed out, apparently due to a sudden surge in stool movement through my system. Maybe Miralax had nothing to do with it, but all I can say is thank goodness I was at home with my family to watch out for me and not driving! I would consider taking it occasionally, like once a week, if it was safe to mix the two. It seems like a lot of people on the forum do use them together, but I suppose I should get a professional opinion.


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## annie7

hi---so sorry for all the problems you've been having with linzess..

yes, i've seen posts about people taking miralax with linzess, both on here and on another board i read. some people did mention their gastro docs recommended this since linzess by itself didn't work for them. and some had success with taking it that way. i myself have tried taking it with milk of mag (which works better for me than miralax) as well as with simulants, all with both of my gastros' approval.

still couldn't get linzess to work quite right for me though but it sure is worth a try. it very well may work for you. we're all different in how our bodies respond to meds.

but yes you are right--your own doc's approval is always the safest way to go, since he/she is familiar with your own particular health situation.

and yes--so sorry you're having such problems with your current gastro doc. really it seems like you should certainly be able to call up with a question, leave the message with a nurse, have her ask the doc about it and then get back with you. in a timely fashion of course. that's the policy at both my gastro docs' offices and i'm really thankful for that. and i can also get in to see a PA if i have a problem and i can't get in to see the gastro soon because he's so booked up.

maybe you should change clinics if you can---find one that's more responsive to their patients.

and yes you are so right----all the problems with our health care system--docs not allowed to spend much time with patients, etc etc. i do so agree with you....makes it so hard on us patients...

good luck--take care...


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## Nuffa

I also take linzess along with miralax. thats no problem.whats PA, Annie?


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## annie7

a physician's assistant.


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## Displaced

I have been on Linzess for several months, and with the agreement of my gastro doctor, decided to quit today. As my earlier posts show, I was having a lot of problems with alternating diarrhea and constipation, even after cutting back to 1 pill every other day a few weeks ago following a desperate call to the doctor triggered by an unexpected "outburst" just as I was leaving for the airport to start a vacation. Just what I needed: diarrhea while stuck on a plane for four hours! (Fortunately it didn't happen again, but I was tense all the way to my destination worrying about it.) What pushed me to the decision to stop this drug was a terrible morning, which had been preceded by one relatively uneventful day and four or five unpleasant ones. This morning I had diarrhea four or five times within an hour or rwo. At that point, I took a Pepto Bismol tablet, although I usually just let this run its course. I decided this much activity was significant enough to warrant intervention. I later was able to talk to the doctor, and we agreed that Linzess was not for me, so I'm going to try Amitiza again. That didn't work out really well either when I tried it last spring, but I don't remember as many negative incidents. I was given the choice or the lower or higher dose and decided to try the lower this time in hopes of reducing the side effects. I'll give my poor, battered body a couple of days to recover then start the Amitiza. Here's hoping for some better days.

I realize that most drugs are approved by regulatory agencies despite what we in the public would consider very low rates of effectiveness, but it is so disappointing when there are just a few options out there for your condition and none of them help very much. Maybe somewhere out there, researchers are working on some other things that will help more people like us.


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## aspyn

I think I'm with you on this. I've been on Linzess for several months now, and still get very watery diarrhea almost every single day (95%). At this point it's not my body acclimating to the meds, I think they just don't work well for me. Before my next follow up I will try the every other day option, but if I'm still having issues by next month I think I'll switch back to Amitiza. Since I had a lot of nausea/rapid heart beat with Amitiza 24mcg, I may try the lower dose. But that 24mcg worked well for my bowel-wise. My NP thinks it may be part of my GI pain but I think it's worth trying to go back. With all the GI problems I've had, and my many years on Amitiza (approx 5 years), I am really good at holding it and working through urgency, but I shouldn't have to deal with it every single day.


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## Thisisaproblem

I wanted to post an update since I just got back from a two week trip to Italy. This is the best trip I have had in 14 years. I finally (think) I found a formula that works for me. The doctor said I could take miralax up to 4 times a day and I was taking it three but that can be hard while traveling. Sometimes finding a clean glass and something to stir with was a challenge. But I seemed to strike success when taking one dose of miralax at bedtime and one 290 in the am, sometimes when I got up around 5 am to use the the bathroom (just pee). There were only two days I didn't go the entire trip and that was when I missed the miralax or took the Linzess too soon ( I think) after eating. I didn't have any incidents where I felt I was at risk for an accident. I felt great. After some miserable trips over the years, it was wonderful. I will continue to update any changes.


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## storm896

I feel like I may be the only one not getting results from the Linzess... I started the FODMAP diet about 2 weeks before going on Linzess and it really helped with the gas and bloating but not constipation, so I figured with the Linzess it could be just what I needed!

I started on 145 and went 3 days without a bm so I added the magnesium I was taking before back in, which worked. I've tried going to up to 290 with no results also. It's been about 2 weeks now and it doesn't seem to be doing much, though I am wondering if it is the culprit behind my increased bloating as the FODMAP diet hasn't been as effective since I got on linzess. I think I'm just going to go off of it and stick to my magnesium supplements for now.

Anyone else experienced this?


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## flossy

Storm896,

Most of the Linzess reviews on this thread are on the negative side, so don't feel alarmed if you don't like it either.


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## Britneyewood

Has anyone found a way to stop the awful D?? I've dealt with constipation most of my 23 years, that I can remember. I took my first Linzess this morning and I have not left the toilet since! I can deal with the common loose stools but I am full on water with cramps so bad I am literally screaming every time they come on. Ugh I am not continuing with this!


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## Thisisaproblem

Just wanted to update because this whole thing has been going very well. I figured out that if I take one dose of Miralax daily and the 290, I am golden. I would suggest taking 2 or 3 doses in a day if the Linzess isn't working for you until you get going, then backing off to one dose of Miralax a day. If I stop the Miralax, the Linzess stops working.


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## flossy

Britneyewood said:


> Has anyone found a way to stop the awful D?? I've dealt with constipation most of my 23 years, that I can remember. I took my first Linzess this morning and I have not left the toilet since! I can deal with the common loose stools but I am full on water with cramps so bad I am literally screaming every time they come on. Ugh I am not continuing with this!


I have some Linzess pills a friend sent me but after reading a lot of these reviews I'm afraid to try them now..... I certainly can't take them on a day I have to work and I would hate to ruin a day I have off by having to go to the bathroom all day. You know?


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## TriedItAll06

I have been on Linzess for a while now and MOST DAYS it is truly wonderful.

My only complaint is: the amount of water i have to drink with it each morning.

I seem to have to drink at least 32 ounces of water before, and an additional 16 oz of water after taking it (within that 30 min window before eating). THEN I drink my morning coffee. This routine seems to work its just getting old because as you can imagine, it is very difficult to have an appetite for breakfast like a normal person after consuming this much liquid JUST to get a pill to do its job.

Does anyone else have a routine like this? How much water do you drink with your Linzess and still have consistent, good results??


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## annie7

wow--that much water? ugh. i've read quite a few people say you have to drink "a lot" of water to get it to work although no one mentioned exactly how much "a lot" is.

when i take it, i drink a couple 8 ounce glasses of water--one with the pill and one after. i've tried drinking a couple more 8 ounce glasses of water right after taking it but that didn't help. i don't get consistent results with it, though, either. some days it's D on and off for several hours--especially if i take it 20 minutes or less before eating-- and other days it doesn't do much of anything...

like they say, we're all so different in how we react to meds and from what i've read on linzess that really seems to be true. it sure does tend to affect people differently.


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## TriedItAll06

Yes annie, it doesn't seem to work at all without my very specific routine, which, sometimes is very difficult to squeeze in (i.e. how can I ever have breakfast in bed, or go camping, etc.): 1 33.8oz bottle of ice water, followed by my pill, then another 10-16 oz of water. THEN, after "30 min" I take my coffee. But this "routine" is not exactly ideal all the time and is a real pain. Not to mention i'm never THAT thirsty that early in the morning (who is!?).

I just discovered Amitiza after seeing an ad in a store. While Linzess does work wonders (MOST DAYS) for me - as long as I complete the ridiculous routine - I'm now wondering if amitiza would be easier because of less water?

I also already take Miralax in the a.m., and magnesium citrate at night, and enemas on the days my linzess doesn't work (because I get severely uncomfortable if I don't go daily).

This IBS-C mess is for the birds.


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## annie7

good luck with amitiza--it's worth trying. i've tried everything---lol.. it would be nice for you to find something that doesn't require you to drink oceans of water...


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## Rose

Hi Annie, I didnt realize you were still taking the Linzess. Do you take it even after taking the Ducolax and milk of magnesia? I haven't tried the Ducolax yet, but I'll let you know if I do and what results I get.


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## annie7

Hi Rose i'm not taking linzess regularly. just occasionally, when i still feel backed up from the dulcolax and milk mag not working completely--and only on days when i can be home all day due to the D lol..... and i like to experiment with it--still trying to get it to work right. i have abominal adhesions from my surgery and that makes it even harder to get things out.

sounds like zelnorm isn't working for you anymore?


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## Rose

Sometimes the Zelnorm works good and sometimes not so good. I just wish I could find something that works on a regular basis. A couple weeks ago, I took the Linzess and it worked good. No diarreah, just normal poop. The very next day it did nothing. Sometimes I just think, maybe I should take nothing at all and let nature take its course, but I'm afraid I would get impacted and then I'd never go. It's just sooooooo frustrating.


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## annie7

oh yes, i agree...


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## aspyn

It's really interesting to see how completely differently this med affects people. Just to give an update on my situation, I completely stopped taking Linzess about a month ago and went right back to Amitiza. The Linzess gave me D all but maybe 5 days of the 6-8 months I was on it. And most of those days I was running to the bathroom 3-4 times. I'm currently on the 24mcg Amitiza at night only. I haven't started taking the morning dose as the reason I went off it in the first place was the side effects (rapid heartbeat, nausea), but my doc gave me some of the 8 mcg dose to try in the mornings to see if I have fewer side effects. I've been having pretty regular bm's on the night dose (knock on wood, I don't want to jink this amazingness) so I haven't added the morning yet, but I'm pretty sure I'll need it when I go out of town, which is when my C is the worst (no matter what I eat).


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## TriedItAll06

Have any of you guys tried Amitiza? Called my doc today (waiting on call back) to find out his opinion. Scared to mess up routine with linzess since its working but don't like thinking about drinking so much water for the rest of my life, so i'm wondering if amitiza is worth a shot........

As with most things, when I've researched amitiza forums there are good and bad sides :-/


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## TriedItAll06

Sorry just seeing your response aspyn


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## aspyn

TriedItAll06 said:


> Sorry just seeing your response aspyn


Other than this recent 6 month or so jaunt into trying Linzess, I've pretty much been on Amitiza since it was new, I think over 5 years now. I'm happy to answer any questions you have. I've found it has a longer term effect vs the shorter term I took it and now I need to go effect I had with Linzess. But there are more systemic side effects with Amitiza. Cost with my insurance is about the same.


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## TriedItAll06

Thank you Aspyn...

How much water do you have to drink with Amitiza?

I spoke to my doctor... aparently I HAVE tried Amitiza but quit soon after starting it due to shortness of breath that it gave me  Did you experience that side effect as well?

I know what you mean about running to the bathroom on linzess... but I'd MUCH rather have that than the blockage/constipation I had before so... I'm torn.


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## aspyn

I usually just take my Amitiza with 1/2 glass of water.

I did get a little bit of a chest tightening/SOB symptom but that got better over time. I do still sometimes get nausea/heart palpitations with it. I always take with food but still get it sometimes. I am currently only taking the 24mcg (high dose) before bed so I don't feel sick. I am going to try to 8 mcg in the morning to see if I have fewer side effects with that, but I just haven't tried it yet. The side effects were the reason why I tried the Linzess instead earlier this year, but my body really doesn't like the LInzess at all so I would rather take a little bit of side effects from the Amitiza.

Do you know what does of the Amitiza you were on? If you were on the 24mcg you may want to try the 8 mcg first, and maybe 24mcg at night to help lower side effects. And ALWAYS take Amitiza with food (the opposite of Linzess).


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## TriedItAll06

More questions aspyn....

How much water did you have to drink when you were on Linzess? (And did it have to be "just water" before anything else, or were you able to have "ANY" liquid when you took it... juice, coffee, etc.)

I apologize for the next slightly graphic question but I have to ask... Were the BM's different or, less?, with the amitiza than with the linzess? I need that urgent complete emptying from the linzess but... so tired of the water.

Thanks


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## TriedItAll06

And to answer your question, i was on the 24mcg dosage. Im also on the higher linzess dose. Not sure 8mcg would work (produce a bm). I tried the amitiza way back in 2012 so to be honest i cant even remember the 24 mcg produced a BM..


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## aspyn

TriedItAll06 said:


> More questions aspyn....
> 
> How much water did you have to drink when you were on Linzess? (And did it have to be "just water" before anything else, or were you able to have "ANY" liquid when you took it... juice, coffee, etc.)
> 
> I apologize for the next slightly graphic question but I have to ask... Were the BM's different or, less?, with the amitiza than with the linzess? I need that urgent complete emptying from the linzess but... so tired of the water.
> 
> Thanks


When I was on the Linzess I just drank a glass of water as soon as I got out of bed in the morning. I tried not to have anything else for at least an hour.

My body seems to react to the Linzess differently than the Amitiza. Even on the low dose on Linzess I had significant diarrhea practically daily (my stomach was so loud and gurgly starting about 2-3 hours after I took the meds and then it lasted for 2 up to 6 hours sometimes). But on the high dose of Amitiza I get pretty regular BM's (knock on wood, seems to be working well right now). I am only taking one a day right now but probably will bump up to two. I have only missed BM's 1-2 times since I've been back on the Amitiza, and even with those I had relatively regular ones again the next day.


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## pattygirl

Railfan -

I just went on it this past Monday when my doctor gave me samples. I was having IBS C symptoms at the time. Before I even took one that night when I got home, I had a massive diahrrea attack. Took it anyway that night and the next day had lots of gurgling and bad cramps with continued diahrrea.

I stopped it as of this morning since I am no longer constipated but having the opposite symptoms.

It has stool softening properties which I do not need right now.

Also, it says it may take up to two weeks to work. That is not much help when one is in the immediate stage of massive constipation.

Let us know how you are doing without it. I am hoping tomorrow I will not have the cramps.


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## pattygirl

The doctors (so far) can't seem to get on the same page about this med. Mine mentioned NOTHING about having to be cleaned out before taking it (for optimum benefit) and told me one pill (290 mg) TWICE per day.

I think they are trying this out on some of their chronic IBS patients to see if it helps.

I get too much stomach gurgling when I take it at night so have just done one in the morning. Also, I am currently in the IBS-D stage with alot of gas and bloating still.

I just wish we could get some relief. I stayed "gassed-up" almost constantly even though I resrict my diet a huge amount to avoid 'gassy' foods and cut out caffiene, alcohol and smoking. Still no real relief from IBS - C and D plus I have diverticulitis.


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## TriedItAll06

Tried cutting out 16 oz of my usual water intake this morning with my linzess. No bm. (As I stated, it has a tendency to not work or not work as well without almost 2 liters of water.) This is just awful. I mean its a lifesaver OTHER THAN the water issue. And I remembered another unpleasant side effect I had with Amitiza - fatigue. Did you have that, and did it go away like the shortness of breath did, Aspyn?

Trying to decide... being that it is friday, I am either going to continue lessening the water and see if it works at all over the weekend (I mean, if I'm eating it HAS to come out SOMETIME, right???) OR... not take the linzess at all and see how bad I feel.... However, I am aware that this is a daily maintenance drug and not an "as needed" one:-/


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## aspyn

I don't think the Amitiza has given me any fatigue issues on top of any other issues I have, no. The biggest thing for me is the nausea and that little bit of increased heart rate. But since I've been only taking it at bedtime that's been better. I wish I didnt' have any side effects, but I'll take them over constant daily diarrhea any day.


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## Crampyy

Hi all~

I've suffered from chronic C my whole life ( I am a 20 year old female). When I was 2 y/o the doctors told my parents I had an enlarged colon and that it would fix itself. Growing up, I was afraid of doctors and never discussed my issues. I do remember times in middle school when I would stay home sick due to the pain of my symptoms. It wasn't until switching from pediatrics to Primary Care that I informed my new doc of all my problems. She had me try MiraLax which I used every morning for a week and a half (I also seriously increased my water intake that week+). That did not work at all. She also had me keep a journal. I had never tracked my BM's and dietary habits before. I wrote down every meal, every time I ate or experienced symptoms, every BM and every time I felt pain or discomfort. I was astonished at how often I experienced pain~ multiple levels of pain throughout every day. My doc referred me to a gastroenterologist who thinks I have IBS-C. He has given me samples of Linzess to try out. He says if those do not work for me he will try a colonoscopy to see if the problem lies deeper (no pun intended).

I'm pretty worried about starting the medication because the reviews are so mixed. But I'm honestly okay with having daily D as long as I'm rid of the constant constipation, gas, bloating, cramping, soreness, fatigue and overall discomfort. However I am worried about it impacting my ability to work. I do currently also suffer from bouts of D, but usually just when I am on my period or very, very anxious. I have chronic constipation every day.

I will start Linzess tomorrow morning, 8 am, 290 mcg.

Is there anyone else in this forum who is around my age and has had similar symptoms since childhood? I'm still skeptical about having IBS or something greater...


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## aspyn

Crampyy - I am older than you (early 30's) but have also had digestive issues my entire life. I think it's great you're putting in the investigative work and being proactive. It can be very frustrating but you have to be your own advocate. I've had lots of tests done and they haven't found anything specific (thus my IBS diagnosis) and I have even had to fight doctors or other practitioners who want to think it's in my head or that it's only related to stress. I wish you luck!!


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## Crampyy

Thank you aspyn- I will be posting updates on my experience with Linzess starting tomorrow


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## Crampyy

Update: I took Linzess 290 mcg at 8 am. It is now 9:40 am and I have had one small BM (not diarrhea- normal consistency). I was actually hoping for and expecting a bit more since I have not had a BM in 2 days. I have not experienced any worsening pain or discomfort. A gurgly stomach and I was thinking I'd start reacting to it- but so far not much luck. I just ate breakfast to see if that helps- we will see.


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## annie7

because meds like linzess and amitiza are not laxatives--they function more like bowel regulators--it's usually a good idea to do a clean out first before trying it if you're backed up. that way you can start with a clean slate so to speak which gives it a better chance to work successfuly.

also--generally speaking, the closer you take linzess to food, the more of a D effect you'll have. which was definitely my experience.

and yes, maybe eating breakfast will help it kick in more.

good luck. hope it helps you. I have read quite a few linzess success stories, mostly on another board I read--not this one. this one is comparatively quiet.


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## Crampyy

Thanks for the response, annie.
On Linzess I had gas and bloat all day, although I did have a few small BM's throughout the day and hardly any pain (just discomfort from terrible bloating). But the stool was dark and hard, so I will try to clear bowels before taking Linzess again.


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## flossy

Crampyy said:


> Thanks for the response, annie.
> On Linzess I had gas and bloat all day, although I did have a few small BM's throughout the day and hardly any pain (just discomfort from terrible bloating). But the stool was dark and hard, so I will try to clear bowels before taking Linzess again.


-Keep us updated, Crampyy!

I have some of this medication at home but am afraid to try it because I don't wanna risk getting stuck in the bathroom on and off all day at work. Also, the reviews for Linzess here aren't too promising, so.... you know.


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## Crampyy

Flossy- yes, I chose days off work to try it out. Unfortunately we're getting hit with the upcoming blizzard tonight, so I won't be taking Linzess for a few days (if we lose power I'll be without a working toilet.... lol).

I think it's pretty safe to say everyone is going to experience something different. For instance, I've been feeling the urge to go every time I get to the bathroom today, and usually produce a small BM each time; whereas I was expecting bad D. Still will be waiting to see if cleaning my system out first will help with movement. I'll keep you posted~


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## annie7

Crampyy--good luck. yes doing a clean out might help.

and good luck with the weather out your way, too. fingers crossed it doesn't get so bad you lose power. i do know what you mean about a power loss and no working toilet! i've been there myself many times. NO fun...







.i finally learned how to flush it manually with a bucket or two of water...

and oh yes, Crampyy--you are so right about what you said about linzess and how everyone's experience with it is unique. good for you for giving it a try. as far as i'm concerned, i think everything is worth a try--otherwise how are we ever going to know if it will work for us. i've suffered with chronic C for way too many years so i never let negative reviews keep me from trying something--i just want to find something that will help me manage this better. and as i've mentioned before, here on this board frequently we never get to read the positive reviews--only the negative ones--because often people who have success with something never come back to post about it. it's the people with problems who post.

thanks for keeping us posted.


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## Crampyy

Thanks annie! Thankfully we haven't lost power, so I took Linzess again today. I ate exactly a half hour after taking it and had a small but regular kind of BM. 2 hours later I had D. I feel better today than yesterday as far as bloating and fullness. And as was the case yesterday- no pain! So things are looking up.


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## annie7

oh good--that's terrific news--both about linzess (hooray!) and not losing power (hooray!)

so glad you're feeling better.


----------



## lasdoe

Ever since I was in elementary school I had terrible stomach and back pain all the time and we never knew why even after numerous trips to the ER. In the beginning of January I had so much abdominal and back pain that is was debilitating to the point to where I almost passed out from the pain. I ended up in the ER on 3 separate occasions within a week span, on my 3rd visit I was diagnosed with IBS. I was completely devastated and scared. The doctor told me there are no two similar cases and food and stress are what triggers it, well great, i love food and I stress over everything. My GI doctor prescribed me the 145 mg tab of Linzess as well as a low dose anti-depressant to help with stress. The Linzess gave me extreme diarrhea for the first 2-3 days I was on it, however since then I have had a normal bm every day since I started taking it. I do still get strong abdominal or chest pains but I find that I get those when I eat greasy foods or not enough food as I do have a loss in appetite due to being scared of triggering my IBS. I do eat a mostly vegan diet now that is high in fiber. I do find that meat and dairy makes my IS worse so I can only have small amounts of those every other week or so. I eat mostly fruits, oatmeal,veggies and beans. I believe that the linzess combined with my high fiber diet is what has helped me tremendously as well as the anti depressant has helped me not get stressed over little things. I just ask myself is stressing over this worth the pain? The answer is definitely not! I would highly, highly recommend linzess to anyone with IBS-C!!!! I also used to only drink 1-2 water bottles a day and now drink at least 120 oz of water every day that also helps alot with my digestion. My GI said there is NO medicine like WATER. ASK YOUR GI ABOUT LINZESS!


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## annie7

Lasdoe--thanks for the positive review. it's good to hear the success stories. too often we hear only of the failures.

so glad Linzess and your diet and increased water intake are helping you.

and yes, you are so right about stress. worrying, stressing--all that doesn't help, just makes things worse and totally robs us of the energy we need to deal effectively with daily life.


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## Crampyy

Hi again. I've been on Linzess for some time now- about 3 weeks- and have some more updates. When I was just on the trial samples it was iffy- the first few days I felt great. I lost about 5 pounds in one or two days from bowel and bloating alone. But on the 5th day I was extremely constipated and felt like I was about to have D all day, but it never came. I felt so sick the whole day. I didn't take it for the next two days because I was at my girlfriend's college suit. There, I don't have the luxury of sprinting to the bathroom whenever necessary (And, believe me, when Linzess kicks in I have to sprint).

The first day not taking it I actually had regular bowel movements throughout the day. It didn't really feel like enough as it never does, but it was great. The second day off of it I was back to my IBS-C self. I told my doctor all this and he wants me to try it more so he gave me a prescription (I'm lucky enough to only have a $20 copay). 
But my symptoms have been the same- some days I am constipated, other days I have 3-6 very watery, very urgent movements. If my symptoms don't even out and get better within a few months I will probably ask to have a colonoscopy performed to rule out any other problems. Although I'm worried about whether or not this would be covered under my insurance- Anthem blue care.


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## Crampyy

Forgot to add- During the beginning of my treatment my pain was totally gone. Now I get cramps, the same amount of bloating, and discomfort every day again. My whole lower left abdomen cramps up every day, especially when I try to have a movement.


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## aspyn

Crampyy, all insurance is different, but I know that my insurance covered my colonoscopy since it was ordered by my doctor as medically necessary. I still had to pay my percentage based on my insurance (at the time that was $800 with the coverage I had at the time, but that was only 20%). You should have a breakdown of what's covered by your insurance in your plan and you can always call and ask them first before you have anything done.


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## Crampyy

Thank you, aspyn


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## flossy

Crampyy said:


> Forgot to add- During the beginning of my treatment my pain was totally gone. Now I get cramps, the same amount of bloating, and discomfort every day again. My whole lower left abdomen cramps up every day, especially when I try to have a movement.


I am not encouraged to try this medication at all anymore. I am afraid (for lack of a better word) to try it because of all the bad reviews it gets. Plus, I think I would need a few days off work just so I could be close to a bathroom!

Keep us posted, Crampyy!


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## Crampyy

Honestly, I would wake up an hour earlier than usual to make time for it (I used to wake up at 8. Now I wake up around 7:20, take my meds, eat at 7:40, shower, and have extra time to use the bathroom before leaving the house at 9:30). Because after a few hours the D stops. Maybe start it on a day you aren't working though.

But I would suggest trying it- it'll be different for everyone, and nobody is getting seriously bad side effects. They're just inconvenient. I'm sure the worst thing that'll happen is you have a day of discomfort and frequent bathroom trips. But I think it'd be worth trying on the off chance that it works a bit better for you.

Best of luck


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## annie7

Crampy.... sorry you're having trouble with linzess. and that you're having pain and cramping problems. sounds miserable. unfortunately i had problems with linzess, too. first it worked when taken as directed--for about ten days--which was great. then it gradually quit working. now i just take it with food (the only way it works for me) and use it only for cleanouts on days i can be home all day. we're all different. it seems to be very much a YMMV sort of med.

but you're right. it's good to give it a try. it does work for some people. i've read a lot of success stories especially on another board.

good luck with your colonoscopy. when my C problems got worse, my gastro ordered one and told my insurance company--a fussy, somewhat tight-fisted HMO--blue care network--that it was medically necessary due to a worsening change in bowel habits. and they paid for it even though i'd had my regular, screening colonoscopy (which was normal-no problems) only four years earlier.


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## TriedItAll06

pattygirl - I have not heard of people being prescribed/instructed to take TWO 290 doses per day. Perhaps that will be the next step for me. I am doing much better though. I decided to stick with the Linzess, despite the water intake issues. Its just a way of life I will have to get used to if I don't want to be constipated :-/

crampyy - how much water did you take your first dose with? and how has it been going for you since?

To everyone: With the mention of Miralax, this sparks another question for me. I also take the miralax daily, and feel that it HELPS (although alone it does not work for me...). My concern is the numerous alerts and articles lately discussing the long term negative and even dangerous health effects of using miralax, which supposedly contains the same ingredient as antifreeze (yes, automobile antifreeze). Any thoughts on the truth to these alerts or the safety of long term use? Anyone out there been using miralax for years with no negative effects?
Thanks!


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## annie7

this question has come up before about miralax and anitfreeze--Miralax is pure polyethylene glycol (polyethylene glycol 3350--PEG 3350). ethylene glycol is antifreeze. Miralax is one molecule away from antifreeze. so it's not the same thing as antifreeze.

but yes, i've read the articles and alerts etc. i do know quite a few people on another board i read who have used miralax daily for many years with no ill effects or problems. the one woman takes large doses of it daily and has for years. she has slow motility through her entire digestive tract and it's the only way she can go.


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## Crampyy

Trieditall- I've never been a heavy water drinker, so I've been pushing myself to drink more water. When I first take the meds in the am I drink maybe 2 or 3 cups... usually. I also carry around a large water bottle with me every day and try to steadily drink the recommended 8 cups a day.

Also, not sure if I mentioned this before- what I do after Linzess and the first meal of the day makes a huge difference. I need to be active after eating- I usually shower right after- for it to kick in. If I lay down after eating and after Linzess I don't have a BM or it takes a lot longer to happen.


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## flossy

Crampyy said:


> Trieditall- I've never been a heavy water drinker, so I've been pushing myself to drink more water. When I first take the meds in the am I drink maybe 2 or 3 cups... usually. I also carry around a large water bottle with me every day and try to steadily drink the recommended 8 cups a day.
> 
> Also, not sure if I mentioned this before- what I do after Linzess and the first meal of the day makes a huge difference. I need to be active after eating- I usually shower right after- for it to kick in. If I lay down after eating and after Linzess I don't have a BM or it takes a lot longer to happen.


So so far Crampyy would you give Linzess a thumbs up or thumbs down?


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## Crampyy

That's a hard question... I don't think I can decide either yet. I don't know if the benefits outweigh those side effects. Maybe I'll be able to decide later. Just took today's pill.


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## LuvTheLoo

mwilson said:


> I've been taking Lizness for about 2 weeks now, and also Flax Oil in a smoothie every morning. I am going more frequently now, but if I don't take the Flax Oil I usually don't get any results. Today I am feeling a side effect from the Lizness. I am very bloated and my stomach is sticking out like I'm 6 months pregnant. I am misreable and debating if I want to stop taking it and just do the Flax Oil. Is anyone else having this problem?


Are you drinking enough water though the day after taking Linzess ? you need at least 1 to 2 quarts of water a day. No sodas or sugar drinks.

vince


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## LuvTheLoo

annie7 said:


> Crampyy--good luck. yes doing a clean out might help.
> 
> and good luck with the weather out your way, too. fingers crossed it doesn't get so bad you lose power. i do know what you mean about a power loss and no working toilet! i've been there myself many times. NO fun...
> 
> 
> 
> 
> 
> 
> 
> .i finally learned how to flush it manually with a bucket or two of water...
> 
> and oh yes, Crampyy--you are so right about what you said about linzess and how everyone's experience with it is unique. good for you for giving it a try. as far as i'm concerned, i think everything is worth a try--otherwise how are we ever going to know if it will work for us. i've suffered with chronic C for way too many years so i never let negative reviews keep me from trying something--i just want to find something that will help me manage this better. and as i've mentioned before, here on this board frequently we never get to read the positive reviews--only the negative ones--because often people who have success with something never come back to post about it. it's the people with problems who post.
> 
> thanks for keeping us posted.


She prolly means no working toilet because she is on a well with a electric pump for that well. Boy i feel your miserable feelings.

vince


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## annie7

yup, that's me. i live out in the country. we're on a well with an electric pump. the power goes out here a lot. no power=no well =no water =yuk.

that's why i learned to flush it manually.


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## LuvTheLoo

flossy said:


> I am not encouraged to try this medication at all anymore. I am afraid (for lack of a better word) to try it because of all the bad reviews it gets. Plus, I think I would need a few days off work just so I could be close to a bathroom!
> 
> Keep us posted, Crampyy!


Flossy

if there is pain and bloating and cramping and you have nothing else that will help. Linzess is the answer. When you run out of options and surgery is next then you turn to Linzess. I don't have that option. Either surgery for me or the pill. I'll take the pill thank you very much.

Vince


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## LuvTheLoo

annie7 said:


> yup, that's me. i live out in the country. we're on a well with an electric pump. the power goes out here a lot. no power=no well =no water =yuk.
> 
> that's why i learned to flush it manually.


good very good. I am so glad my toilet is only 10 feet from me in my house. And i can clean myself out and continue on with my day without* pain. I am VERY happy with linzess. It's that or surgery. I'll take the pill and look for a loo asap.

Vince


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## flossy

LuvTheLoo said:


> Flossy
> 
> if there is pain and bloating and cramping and you have nothing else that will help. Linzess is the answer. When you run out of options and surgery is next then you turn to Linzess. I don't have that option. Either surgery for me or the pill. I'll take the pill thank you very much.
> 
> Vince


Thanks, Vince.

I can deal with the pain and cramping but it's the slow-mo constipation and then usually having to do it all over again an hour later that gets me mad.


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## LuvTheLoo

flossy said:


> Thanks, Vince.
> 
> I can deal with the pain and cramping but it's the slow-mo constipation and then usually having to do it all over again an hour later that gets me mad.


Flossy

i understand your pain. Some days for me are better and some are worse. I usually get really iterrible when i am in pain and the cramping is sometimes unbearable. Are you drinking enough water daily? Did you say your a guy or a girl? I know a few girls - women sorry, that have worse pains then guys. I am a guy long hair hippie personality and i usually go with flow. it takes a lot for me to get upset kind of guy. MY doctors here in Idaho USA are not so good. I live in a small town and only have 2, yes 2 docs that are specialists in GI. There is a whole town full of MD's here but only 2 GI Dr.s. I have very irritable bowls Flossy. My cramps are mostly all day. If i do not drink plain water. I don't drink sugary drinks at all. No sodas no sweet fruit juices. I live on a modified low Fodmap diet. And try to stay away from wheat. I am 300 pounds and a big man. I am 6 foot 4. 300#. And got the hunger of 3 men! And i don't eat after 7 or 8pm.

So cramps yes i know. It never stops. But i look fwd to taking my linzess Flossy ! I cant wait till morning to take that pill and clean out and get that fresh feeling again. I welcome your comments my friend. Not a problem

Vince


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## flossy

LuvTheLoo said:


> Flossy
> 
> i understand your pain. Some days for me are better and some are worse. I usually get really iterrible when i am in pain and the cramping is sometimes unbearable. Are you drinking enough water daily? Did you say your a guy or a girl? I know a few girls - women sorry, that have worse pains then guys. I am a guy long hair hippie personality and i usually go with flow. it takes a lot for me to get upset kind of guy. MY doctors here in Idaho USA are not so good. I live in a small town and only have 2, yes 2 docs that are specialists in GI. There is a whole town full of MD's here but only 2 GI Dr.s. I have very irritable bowls Flossy. My cramps are mostly all day. If i do not drink plain water. I don't drink sugary drinks at all. No sodas no sweet fruit juices. I live on a modified low Fodmap diet. And try to stay away from wheat. I am 300 pounds and a big man. I am 6 foot 4. 300#. And got the hunger of 3 men! And i don't eat after 7 or 8pm.
> 
> So cramps yes i know. It never stops. But i look fwd to taking my linzess Flossy ! I cant wait till morning to take that pill and clean out and get that fresh feeling again. I welcome your comments my friend. Not a problem
> 
> Vince


Thanks for the reply, Vince.

-I could drink gallons of water per day, it doesn't make a bit of difference with my constipation. Yes, I've experimented. All it does it make me have to pee more.

-I'm a guy with long hair too, but have nothing to do with the hippie personality or generation. Let's just say ex-rock 'n' roller, kept hairstyle.

- I can drink soft drinks, no additional problems with IBS-C.

-I really don't think docs/GI docs can do much. Most doctors just tell you to eat more fiber (makes it worse) and write prescriptions anyhow. And they always seem to want you to get another colonoscopy.

-Vince, don't be mad at me for saying this but if you really are that heavy you are eating way, way too much food and doing this to yourself, at least somewhat. It's self-defeating. It is food addiction, period. I am a recovering drug addict, 19 years clean & sober, I know what I'm talking about on the addiction front. Drug addiction/food addiction = same thing.

I don't have health insurance right now but maybe I'll try Linzess. I have some at home that someone gave me but am not trying it yet, as I can't keep running to the bathroom at work all day. I do it enough already (pee). Right now I'm taking Dr. Schulze's Intestinal Formula # 1 (yes, he's a real doctor). All herbal. It makes BM easier for me, but I still don't have complete ones. If I didn't have to work for a living going to the bathroom wouldn't matter as much, me thinks? But I need money, like everyone else.


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## LuvTheLoo

Hi Flossy

Not all day. I get up 3 hours earlier and it makes a long day for myself. Yea we all need to make money but for myself i need to feel cleaned out not gassy and bloated all day. It makes me very miserable to have a pound of poo inside me when i work. Then that's all i think about. When can i go to the Loo today to empty out that sick feelings of my waste? Like right now it's morning and i am having my coffee and thinking about taking my pill and when i will be able to leave the house. i am off today. I have a ton of things to do.







I do not have feelings of i want to go poo. It's like concrete in my belly. My body does not get that urge (signal) i mean. Unless i take the Linzess.

When i said i eat like 5 men i did not mean i do. I have an appetite like 5 men. Have you tried Probiotics? How about Miralax? Miralax works for me when i travel. I do a lot of that for my work.

See if you can get samples? They come 4 to a box i think. Fiber. Nope makes me worse also. Yea i am a hippie. Peace love and VW buses...Sure man what ever turns you on. Oooh man the fuzz are adding so much heat on me! Ha ha. I hate it too. But for me to feel like i am clean and somewhat normal i would recommend Linzess. There is also Amitiza. Thats the weaker of the IBS-C drugs. More for daily maintenance, not a total cleanout. I am also a recovering coke addict. 12 years clean now. I welcome your comments and conversation Flossy. Have a good day

Vince


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## flossy

Hi again Vince -

I said before I already have some Linzess, but haven't tried any as of yet. It doesn't get too good reviews here at all.

I've been a member here for a long time, know a lot of the info people post.... Tried everything ('cept pharmaceuticals).

As Nuffa said here, we are all looking for that magical pill.

My IBS story is here...

http://www.ibsgroup.org/forums/topic/187162-my-ibs-c-story/

....in case you wanna read it. Just read my first post, the rest is what I jokingly refer to as My Anal Blog.

I get up really early too, just so I can try to time it to have a BM or two before work. I too hate having a ton of stuff in there, doing nothing and paying no rent. lol! Today? Massive fail, had to call off. Absolutely ridiculous to live like this, but that is my life sometimes. Debating on trying to get disability of not.... I don't want to, but my condition almost demands it now.


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## LuvTheLoo

flossy said:


> Hi again Vince -
> 
> I said before I already have some Linzess, but haven't tried any as of yet. It doesn't get too good reviews here at all.
> 
> I've been a member here for a long time, know a lot of the info people post.... Tried everything ('cept pharmaceuticals).
> 
> As Nuffa said here, we are all looking for that magical pill.
> 
> My IBS story is here...
> 
> http://www.ibsgroup.org/forums/topic/187162-my-ibs-c-story/
> 
> ....in case you wanna read it. Just read my first post, the rest is what I jokingly refer to as My Anal Blog.
> 
> I get up really early too, just so I can try to time it to have a BM or two before work. I too hate having a ton of stuff in there, doing nothing and paying no rent. lol! Today? Massive fail, had to call off. Absolutely ridiculous to live like this, but that is my life sometimes. Debating on trying to get disability of not.... I don't want to, but my condition almost demands it now.


Flossy

Okay

Anal blog. hmmm haha. I know my magic pill is the linzess. Enuff said. lol. Disability would not be a bad idea . at least try. I am in Idaho. Where are you Flossy? I hear your pain and frustrations man

Vince


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## flossy

Euclid, Ohio, right next to Cleveland. "The Best Location in the Nation," as they use to say.

You say, "I thought Cleveland was a big part of the rust belt?"

Yea, that too!









It's not a great place to live but this is where my family is, so....


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## annie7

hey, vince---i'm a hippie, too.







a old hippie, lol... those were the days... i'm so glad they were a part of my life..


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## annie7

vince--ps--just saw your new avatar--love it! looks a bit like one of my cats.

ok--now i'm really going to go outside..lol...  just can't tear myself away from the computer...


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## Crampyy

Hi, everyone! I have an update:

I stopped using Linzess. I had been using it for a couple of weeks and was drinking the recommended amount of water, if not more. Some days it gave me terrible D, but most days it would give me the feeling of D, but with increased constipation and cramps. It was horrible. So I actually tried a probiotic- Nature's Bounty Probiotic Gold. You take it twice daily, so I take it with breakfast and dinner. I now have consistent bathroom habits. I have been able to use the bathroom every morning for 2+ weeks. It was literally a miracle. I still get cramps, a bit of bloating, and I don't often feel that I've emptied my bowels. However, I can't explain the relief I feel after using the bathroom every morning. Of course some days are better than others; it's best when I'm home, eat breakfast, shower, and then use the toilet. I'm not often able to go if I'm not at home, but that has gotten better too. IBS will be a constant struggle for me, but I've come to terms with that and am satisfied with the probiotic.

I've also started a low dose of Lexapro (and plan on starting a higher dosage shortly) to see if that helps with my anxiety related IBS.

(On the probiotic: it contains a ton- millions- of good bacteria that help your stomach work the way it's supposed to. It has to be refrigerated and I wouldn't dare miss a dose. It can be purchased online, at a pharmacy or a market. I get mine at Stop and Shop. I keep one at my house and one at my girlfriend's dorm so that I'll never miss a dose. I believe it's $10 a bottle and there are something like a month's worth of pills per bottle. If you can, I'd suggest trying it. It can't hurt and doesn't react with any other medicines.)

Good luck guys, I'll let you know if anything changes.


----------



## annie7

Hi Crampy

thanks for the update.

sorry linzess stopped working well for you but that's great that you found a probiotic that helps.

isn't it a relief to find something that works.

take care.


----------



## flossy

Crampyy said:


> Hi, everyone! I have an update:
> 
> I stopped using Linzess. I had been using it for a couple of weeks and was drinking the recommended amount of water, if not more. Some days it gave me terrible D, but most days it would give me the feeling of D, but with increased constipation and cramps. It was horrible. So I actually tried a probiotic- Nature's Bounty Probiotic Gold. You take it twice daily, so I take it with breakfast and dinner. I now have consistent bathroom habits. I have been able to use the bathroom every morning for 2+ weeks. It was literally a miracle. I still get cramps, a bit of bloating, and I don't often feel that I've emptied my bowels. However, I can't explain the relief I feel after using the bathroom every morning. Of course some days are better than others; it's best when I'm home, eat breakfast, shower, and then use the toilet. I'm not often able to go if I'm not at home, but that has gotten better too. IBS will be a constant struggle for me, but I've come to terms with that and am satisfied with the probiotic.
> 
> I've also started a low dose of Lexapro (and plan on starting a higher dosage shortly) to see if that helps with my anxiety related IBS.
> 
> (On the probiotic: it contains a ton- millions- of good bacteria that help your stomach work the way it's supposed to. It has to be refrigerated and I wouldn't dare miss a dose. It can be purchased online, at a pharmacy or a market. I get mine at Stop and Shop. I keep one at my house and one at my girlfriend's dorm so that I'll never miss a dose. I believe it's $10 a bottle and there are something like a month's worth of pills per bottle. If you can, I'd suggest trying it. It can't hurt and doesn't react with any other medicines.)
> 
> Good luck guys, I'll let you know if anything changes.


Thanks for the update!


----------



## LuvTheLoo

annie7 said:


> hey, vince---i'm a hippie, too.
> 
> 
> 
> 
> 
> 
> 
> a old hippie, lol... those were the days... i'm so glad they were a part of my life..


Annie

Yep old hippie and getting older. Not so much gray now but it's coming. Like i cant wait for the gray hair. NOT! haha. Drugstore wash and rinse coloring here i come. Heehee

Used to take Amitiza and then took Linzess. Huge difference. I love the Linzess. It's just i have to prepare for it for my daily errands and work around it. When i am going to the toilet i can't get much work done. Sigh.............

Avatar yea . I might change it up later.

ttyl

Vince


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## flossy

LuvTheLoo said:


> Annie
> 
> Yep old hippie and getting older. Not so much gray now but it's coming. Like i cant wait for the gray hair. NOT! haha. Drugstore wash and rinse coloring here i come. Heehee
> 
> Used to take Amitiza and then took Linzess. Huge difference. I love the Linzess. It's just i have to prepare for it for my daily errands and work around it. When i am going to the toilet i can't get much work done. Sigh.............
> 
> Avatar yea . I might change it up later.
> 
> ttyl
> 
> Vince


Very different bathroom ideology. You go said you go 10 (to 20?) times a day in the morning, in a 2 or 3? hour timeframe. Dr. Shultze (herbdoc.com) says you should go two or three times a day, after each meal. That makes sense to me. Right now I'm at once or twice a day, usually once, on his Intestinal Formula # 1.

...But what you're doing certainly seems to be working for ya, and like you said, it's better than surgery, so good!


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## annie7

yes, Flossy--like you said, we all have different bathroom ideology.

i personally don't care how many times i go, as long as i eventually get enough out so i feel comfortable and not bloated and sick. so for me, due to the laxatives i take, that's about three or four times in the morning. i get up a couple hours early to allow for that.

whatever works! glad Dr Shultze is working for you.

Vince, i'm just an old, gray haired hippie lol...used to have my hair stylist color the gray but i spend a lot of time outside when the weather is good and the sun would just bleach the color out anyway so i gave up on that and now just let the gray hairs do their thing..


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## LuvTheLoo

flashy said:


> 9/12/14
> 
> I have been looking everywhere for someone who has a similar situation as me. I was prescribed linzess 2 months ago after a colonoscopy. I have taken it consistently everyday. I have had constipation all my life, to the point where I was impacted multiple times and had to go to the ER to get it out. I take it everyday and nothing happens except major bloating. About day 5 my belly is so swollen and all of a sudden I have cramps and extreme diarrhea. Anyone else have this issue with Linzess. Seriously, I bloat so bad it looks like I lost 10 lbs after I have a BM. I take the 145 mg now. Contemplating going back to Dr. for more help. When I get that diarrhea I want to take immodium just so I don't have to cancel plans I make with friends. Help.... Anyone...
> 
> 9/28/14
> 
> So above was my previous post about how Linzess worked for me....Which it just didn't work. I decided to try something that is not necessarily medicine and I have gone everyday since I started, no diarrhea or anything. Mind you, I have tried everything. First thing was I stopped taking Linzess for 5 days......What I do now is I take 1 tablespoon of Raw apple cider vinegar ( with the "mother"....I got mine at Whole foods) in the morning and at night. I also drink a bottle of water with a little more than one dose of Miralax at morning and at night, and I also
> 
> take a 30 billion probiotic and drink plenty of water throughout the day. Now I sometimes go twice a day with normal stools. But I really go everyday. This was the answer I was looking for! This may not work for everyone. When it was suggested to me I rolled my eyes and said, "I am beyond all that stuff and have to rely on medicine now".
> 
> If you all are as frustrated as I was, just try it. You may have a little diarrhea the first couple days but it's not severe at all. After a couple days you will go regularly! TRY IT! I would be interested if anyone else tries it and has success. If you decide to let me know!!!!


Flashy

good post. How do you stand raw vinegar by mouth? Eww i cant stand the smell of Vinegar! Could this be mixed into juice or something?

Vince


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## LuvTheLoo

flossy said:


> Very different bathroom ideology. You go said you go 10 (to 20?) times a day in the morning, in a 2 or 3? hour timeframe. Dr. Shultze (herbdoc.com) says you should go two or three times a day, after each meal. That makes sense to me. Right now I'm at once or twice a day, usually once, on his Intestinal Formula # 1.
> 
> ...But what you're doing certainly seems to be working for ya, and like you said, it's better than surgery, so good!


Hi Flossy

How are you man? Good reply and post. No i don't go poo at all without Linzess. My body sez "pain backed up huh' F you! Your not goin and i won't let you. Then comes the cramps if i don't clean out! Then i am on the floor thinking that i need to take something heavy to get my stools started up. Yea sometimes if i ate a shitload of food the night before like Turkey day "Thanksgiving dinner" it could take me upto 6 hours to finish cleaning out. I mean i visit the toilet at least 12x. To finish cleaning out. And then the D slows down after that... But yea my neighbors must think "What the hell is he flushing that toilet for so many times. MAN if i had to pay my water bill god knows that would be the largest utility bill i would have. Toilet paper 4 rolls a week. LOL !! I hate it and my body! But i'll take the pill or and OR cramps or no poop today OR surgery! A fine line man. LOL.

He he ttyl

Vince


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## LuvTheLoo

annie7 said:


> yes, Flossy--like you said, we all have different bathroom ideology.
> 
> i personally don't care how many times i go, as long as i eventually get enough out so i feel comfortable and not bloated and sick. so for me, due to the laxatives i take, that's about three or four times in the morning. i get up a couple hours early to allow for that.
> 
> whatever works! glad Dr Shultze is working for you.
> 
> Vince, i'm just an old, gray haired hippie lol...used to have my hair stylist color the gray but i spend a lot of time outside when the weather is good and the sun would just bleach the color out anyway so i gave up on that and now just let the gray hairs do their thing..


"Hippie"

okay. good reply Annie. h eh eheee lol. (Smile).

I wish i could change my bowel habits. i mean if i had a magic wand and had only one wish to use/grant. Guess, guess what the first and only wish will be! lol

Vince


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## annie7

oh yes--i've often wished for a magic wand. i'd wave that thing over the entire board and give us all healthy colons producing normal BM's --no pain, just glorious effort-free fully-evacuating poop


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## flossy

LuvTheLoo said:


> Flashy
> 
> good post. How do you stand raw vinegar by mouth? Eww i cant stand the smell of Vinegar! Could this be mixed into juice or something?
> 
> Vince


I actually spray diluted apple cider vinegar on my hair/scalp almost every day before I take a shower so I don't have dandruff. I've been doing this for about 3 months now and it works REALLY well. When it gets cold here it seems most dandruff shampoos don't work as well for me, so I tried this and it works great.

As far as doing a shot of it to make me poop? Never tried it. I have drank it before, I don't remember why, and it IS hard to get down.... 'But if it works!'


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## Anna73

Hi all. I'm new to the group. Been reading about all of the reactions to Linz and IBS C. I was diagnosed about 5 weeks. I was put on Linz and took 4 days in a row and had 2 days of constant diarrhea that lasted about 3 hours each. It felt so good to go and empty like that. It felt life changing for me as I've suffered from constipation my whole life. My stomach finally, no longer was bloated and distended. These miracle piled for me worked a good 31/2 weeks. My doctor advised I take them every 3rd day to avoid my first experience with it. I have 3 children do I can't run to the bathroom and be confined to the house like that every day. We went on vacation and it was great. My body final didn't shut down and I was regular with normal
No straining BMs everyday. And then.... I was working on a project and I suppose stress kicked in my IBS c. I started taking the Linz again everyday and I'm in complete pain. Bloated, distended tummy, I look 3 months prego and I'm a thin woman. (42, also per menopausal) my doctor told me to go off for now N maybe take every other day. I'm only off it 1 day but I'm in pain and also recital pressure. I had a bm but it's hard again. Started probiotics too. One thing I read here tho is that vitamin d and omega 3 don't go well with the Linz and the week it kicked in for me, I started to take my vitamins again. Any advice is greatly appreciated....


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## annie7

Hi Anna and welcome to the board

I wonder if the probiotics you're taking having aggravated your constipation? some probiotics seem to make C worse. I've read a number of posts from people about that plus articles on probiotics. VSL #3 and Align are two of the ones that I've heard that tend to make peoples' C worse. some probiotics work to firm up stool and are better for people with diarrhea than those of us with constipation. of course, we're all different in how our bodies react to things like probiotics--YMMV, as they say. might help to stop taking the probiotics and see how you do. or try taking a different one instead. I personally haven't found any probiotics that help me with C but that's me--I'm complicated lol.

about linzess--all I can suggest 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. I found that taking it with food is the only way I can now get it to work for me. then I have D on and off for a several hours or so. not ideal so now I only use it when I need a clean out and can be home all day. you could try taking it 15 minutes before eating and see if that makes it work better but without giving you D all day. experiment --play around with the timing between taking linzess and eating.

and yes, you're right--stress can definitely affect our bowels and make C worse. hope you can find a way to manage the stress and reduce it.

good luck with everything. hope you can get it to work for you again.


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## Anna73

Thank you Annie. I actually took a probiotic today for the first time in a while. Maybe I
Should just stay off everything until my body sorts this out. As of now, my doctor instructed me to stay off the Linz for a few days and then take every other day. I did have BMs the last 2 days... Just hard. And the feeling and bloated and pain is awful. That I would like to get rid of. I generally take the Linz first thing in the am while coffee is brewing. After one cup if be in the bathroom with glee. Those were my life changing weeks of no more prunes every morning and 3 cups of coffee. This morning, I'm back on prunes and 3 cups of coffee. I had fennel today because that's supposed to help with gas and bloat. But my tummy still hard as a rock&#128532; and not from strong lower abs&#128521;. My man is to stay off the Linz through the weekend and just eat my prunes in the am. I eat well and eat enough fiber normally. I'm hoping to have a bm in the morning that reduces my tummy bloat and hardness. If I do, I'll call my doctor and ask how to proceed. My prescription is the lower dose. I feel like the higher one might distend me more??? Not sure. And I read on here some take it at night and they have BMs in the am. I'm so confused&#128532;


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## annie7

yes, the high dose might work better for you. the only way to know is to try it and see. two of the 145 mcg (low dose) pills is the same as the higher, 290 mcg dose.

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 you.

yes, it is miserable being constipated and bloated and in pain. hope the prunes and coffee help. good luck.


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## CMarlene

Today was my second day on Linzess. I have felt terrible .... unbelievable gas, bloating, gurgling and then D. This product was not made for me ... I'll go back to taking my Phillips caplets....stimulant and cramp free. That is the only laxative that does not give me stomach pain and is effective if I take about every other day. Linzess and Amitiza both made me miserable for days. Glad I had samples and did not pay for these. I'd want my money back.


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## flossy

CMarlene said:


> Today was my second day on Linzess. I have felt terrible .... unbelievable gas, bloating, gurgling and then D. This product was not made for me ... I'll go back to taking my Phillips caplets....stimulant and cramp free. That is the only laxative that does not give me stomach pain and is effective if I take about every other day. Linzess and Amitiza both made me miserable for days. Glad I had samples and did not pay for these. I'd want my money back.


There are many people not happy with Linzess on this thread, with a few satisfied customers.


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## consti-pated

I have been on linzess for a year or so... it works OK, and my epoisodes of severe pain have subsided significantly. But I am on highest dose and still have issues with constipation.Also I get severe cramps if I take it with certain things - dulcolax for example. I take it at night because I like to get BM out of the way in the am, and find a direct correlation with how much water I drink after taking it and how well it works (more water = better results). I tend to be dehydrated and don't drink enough water in general, however - this may be why others (who drink plenty of water) get diarrhea from Linzess and I don't (?)


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## annie7

hi consti-pated

i'm thinking that maybe you don't get D from Linzess because you take it at night, before bedtime.

as i mentioned earlier, 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. I found that taking it with food is the only way I can now get it to work for me. then I have D on and off for a several hours or so. not exactly ideal so now i only use it for cleanouts...

so if you're taking it at bedtime, that could very well be why you don't have much D with it. i've read posts from others who say they take it at night, just for that reason--less D.


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## whyworryac

Doc just prescribed me Linzess. Told me to do Mag Citrate clean out and then take it the next day.... 290. I'm a bit nervous about it because I take public transportation, my job is not intensely easy to get to a bathroom (have to walk down a few halls, swipe out, and then punch in code to bathroom) so I'm dreading the diarrhea aspect of this. I have an endoscopy scheduled on the 22nd and I'm also nervous about starting Linzess the day before it. Afraid I'll have an accident on the table which would be horrible - but unforunately, I can't start the Mag Citrate clean out this week so next weekend's gonna have to be what I do. Anyone have updates on how Linzess has gone for them? I see so many reviews. My GI tried to make me take this last year and I didn't. But now I'm in a situation where it's looking like I really need it.


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## bee8174

I was given Linzess months ago by my Dr but was to scared to try them because of the negative reviews. However I took it today for first time because this ibs-c is ruining my life and I've tried so much things...will post what my experience was like later.


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## flossy

bee8174 said:


> I was given Linzess months ago by my Dr but was to scared to try them because of the negative reviews. However I took it today for first time because this ibs-c is ruining my life and I've tried so much things...will post what my experience was like later.


Yes, keep us posted, bee8174, so we can see what you think of it! (I have some at home, sitting here, but never tried it.)


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## whyworryac

I've been on Linzess a week and have been stuck feeling the way I felt back in December before I ever started this medication. I was pretty backed up in early December, I guess. Was dealing with a nagging lower abdominal pain type thing, more like discomfort - an inch or two below my navel. It finally went away a few weeks ago for no real reason - but it has returned as of Wednesday/Thursdsay last week and hasn't let up. I was doing Linzess 290, 45 minutes before eating for the first few days. Then I switched to half hour as of Saturday AM... yesterday I ended up not being able to eat until an hour after taking but did have coffee - and that really got things moving WAY more than the medicine has been so far. I drank a mocha today and ate 30 minutes after taking the pill on the train - but so far I've only gone to restroom once and it wasn't a TON. I'm very frustrated at my lack of results. I was initially so afraid of getting TOO MUCH diarrhea but now I just really want SOMETHING substantial to happen. My GI doc seemed to have such promise for this for me. I'm supposed to check in with him in a month. I might start trying it 15 minutes before breakfast. I don't eat a TON of things in the morning - should I maybe be eating more to help kickstart??


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## annie7

yes, it does help to have a warm breakfast---not just a few bites of something. also drink lots of water with linzess, people say that helps.... and i found that to be true.


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## sjw596

annie7 said:


> yes, it does help to have a warm breakfast---not just a few bites of something. also drink lots of water with linzess, people say that helps.... and i found that to be true.


I've suffered CIC (if not IBS-C) for many years (I'm 66). I had a right hemi-colectomy 1 1/2 years ago as a result of a cecal volvulous. My recovery went great, except that I suffered worse dysmotility thereafter. I had been taking Miralax daily for a couple of years. The GI's PA thought that I could take Miralax twice daily, but suggested Linzess 145 mcg. I started the Linzess in December 2015, and I'm pleased with the results. Before, the worst part of my CIC was being unable to empty myself and gas. So, I'm now 3+ months into Linzess and can share what I've found, recognizing that we all are different.

Yes, taking it with 8 oz. of water makes a positive difference. I take a dose at 6:00 a.m., eat breakfast at 6:30, and invariably have a BM by 8:00. I've kind of been on that schedule forever, anyway. Most often, my stools are "loose," but moderately formed. I may have diarrhea (watery stool) once a week, but it never makes me use the bathroom repeatedly. Sometimes, I may get a weaker urge late in the afternoon and have to make a slight effort to have a small BM. However, I always feel "empty" after my morning BM, and that makes a great difference in how I feel. Compared to my previous existence, I could stay on Linzess indefinitely, although it's not perfect. I've heard mixed reviews about whether we can become "immune" to Linzess over time, as I did with Miralax. I eat a very high fiber diet and take a dose of FiberCon daily. I'm in very good shape, and exercise daily,e.g., running, lifting, hiking,etc. The PA also suggested that it would be okay to take Miralax plus Linzess every day, or once every few days, if I need a little extra help. I tried that in the beginning, but it produced more diarrhea.


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## Suffering Bad

First thing I know for a fact is that it is rare that two people would have the same experience taking Linzess. I was taking the 290mg dose. I came to find that taking 290mg of Linzess in the morning after a light breakfast with 34 to 50oz of water worked for me. Yes, for 3 hours I had what I called fireworks. The the noise, discomfort, and diarrhea. That's what the drug is suppose to do... CLEAN YOU OUT. I looked at it this way, Have 3 hours of "fireworks" and be pain free for 48 hours *-OR-* do nothing and be miserable all the time.

I noticed there are a number of people that are following this thread. I have created a post on this website explaining what happened to me on Linzess.

http://www.ibsgroup.org/forums/topic/279194-relationship-between-taking-linzess-and-developing-diverticulitis-with-perforated-colon/

After being on the drug for a little over 6 months, I was taken to the hospital with acute diverticulitis and a perforated colon. I ended up having a colon resection that removed 14 inches of colon. 3 colonoscopies had come back clean prior to taking Linzess and no family history of diverticulitis. I am a male and I am 48 years old. Started doing homework and research. Discovered I was not alone in this experience.

I am here today asking if anyone out there had a similar experience with Linzess?


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## CB2574

Hello, I am new to these forums and stumbled across this post first.

I was prescribed Linzess after 1 year of being prescribed Miralax and still have issues with constipation. (I follow a strict low FodMaps diet) The VA hospital, which is where I see my GI doctor had to get special permission to order the Linzess. They also send me the Polyethelene Glycol in the mail by prescription, which is a huge money saver.

Anyhow, I waited a few days after my last dose of Miralax before taking my first dose of Linzess. Within the first few hours, I had to go twice and it was awful, stomach pains, etc. This lasted for 3 days and then I went over a week without a BM, taking the Linzess as recommended with no other additives. I was so uncomfortable and bloated, even with my diet on point, that I stopped taking it and once again became a slave to the Miralax.

I can't say what would have happened if I had stuck with it but the bloating and pain was too much for me to wait and find out.

The first few days of diarrhea I attribute to the Miralax still being in my system.

Hope this helps!


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## sagem

My doctor had me try this. I lasted about a week. It was awful. I had to work when I was on it and it was so bad I had litterly went to the bathroom in my pants on the way to work and didn't realize till I had got there. I knew I had gas but other stuff came out too. I was on the low dose at that. It was awful.


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## withoutlinzess

Linzess makes me TIRED at first after I used the bathroom. I sometimes don't have regular stools but DIARRHEA or stringy bowels without complete elimination. Also I feel like I can now ONLY GO ONCE A DAY and the rest of the day my colon movement stops and so this DISRURPTS my digestive process. I feel like all the good bacteria gets FLUSHED out of my colon with this medication. I also feel FULL and sometimes don't have the appetite to eat. I don't have the energy to exercise which I usually do after bowel movements.

I want to stop taking the medication, but my body has become dependent on it. Has anyone had any success with coming off this linzess?

But this drug seriously messes up your digestive process as it blocks sensory transmitters in your body to promote bowel movement. That doesn't seem too healthy long-term.


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## withoutlinzess

This morning I took Linzess then I had my breakfast (orange, banana with toast and coffee with milk). I took my align probiotic with the food and it seemed to limit my bowel to only one.

Have you experience probiotics actually making linzess ineffective?


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## withoutlinzess

Hi Stephanie,

Yes. How is your IBS now. I'm going to STOP linzess after today. I've taken 22 pills so far so 22 days. I know it'll take probably a couple days to go back to normal. I'm going to drink plenty of water. But indigestion, bloating, water just sits in stomach has happened a lot to me.


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## whyworryac

Been on Linzess for about 3.5 weeks now, maybe a little less. Been experiencing nearly daily abdominal discomfort that lasts all day (I feel great when I wake up, as day goes on and I'm sitting at work or wherever it gets worse... heating pad helps though) and I'm exhausted of it. I haven't noticed by BM output to be MAJORLY amazing from this drug either. Though the last day or two seem to have been more, volume wise I guess... but not really. My GI doc wants me on Miralax nightly before bed now too - am gonna try that for 2 weeks. But I'm fucking tired of things not working. Makes me worry something else is horribly wrong with me instead. I've been through colonoscopy, endsocopy recently found hiatal hernia and GERD. So lots happening... abdo x-ray was clear in December beyond constipation soooo.


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## constantfae

I've been on Linzess for about a week and I feel like I went from C to D. I"m not sure it's worth it. I can't function until late afternoon because I'm in and out of the bathroom so much and I'm afraid to eat anything at work because I have to run to the bathroom right after eating. I don't think it's worth it and am considering not taking it anymore.


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## annie7

so sorry you're having problems with linzess. unfortunately for a lot of us, it's a very tricky med. wish we had something better--more reliable.

are you taking the 290 mcg dose or the 145? if you're on the 290 mcg dose, try the 145. might be less D that. way.

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.

good luck with everything. hopefully amitiza will work better for you.


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## PastorCarol

Hello! I was diagnosed with IBS and Celiac Disease almost 15 years ago. I took Donnatal for at least 12 years after that, and then you couldn't get it anymore. I hated that, because I was so well under control that I could occasionally ingest something with gluten with little trouble. After that, I was put on Hyoscycamine (sp?) which works well; however, I have several other medical issues including chronic depression and acute anxiety syndrome, vertigo and GERD. Because of several unfortunate changes of medication, my IBS is flaring after having been pretty much "dormant" for years. In addition to my other medications and a higher dosage of klonopin (anxiety) and celexa (depression), my Gastro Specialist wants me to take Linzess. The first day I took it, I had all the weird gurgling sounds and feelings of pressure , but when I had a bowel movement, it was a long, firm banana-shaped movement so I thought: "Oh, maybe I will be one of the lucky ones that won't get diarrhea." Day two: gurgling sounds, increased pressure, and three gynormous, watery BMs in an hour, followed by several other less severe movements through the day. Same thing on Day 3. I thought "To me this is excessive", so I e-mailed the doctor and she said to keep taking it to give it a fair chance to get absorbed. It's not such a big deal THIS week because I'm on medical leave until at least April 25, However, I am of the opinion that it would be brutal if I continues like this to try to teach school (I'm an Elementary General Music Teacher), play at Church, professional accompanist and licensed non-denominational minister and having to scope out where the nearest toilet is. Especially at school: Even though I am right across the hall from the bathroom, I cannot leave a group unsupervised, and the chances of somebody coming to relieve me before I have an accident are not too good. I am wondering if the constipation is even truly from the IBS, or just from ragged nerves and the many medications I have to take. Did any of you get any flak from gastro doctors when you said you thought the Linzess was not working properly?


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## aspyn

PastorCarol said:


> Did any of you get any flak from gastro doctors when you said you thought the Linzess was not working properly?


Carol,

My local gastro nurse practitioner was surprised when I told her after 6 months of daily diarrhea with Linzess that I just couldn't do it anymore and I decided to put myself back on Amitiza. She told me she thought Linzess was much better and had way fewer side effects. Interestingly, I saw another gastro nurse practitioner at a larger clinic (I was referred for more testing my local doctor didn't have the setup for) and he told me he didn't like Linzess and that the problems I had were super common and that Linzess wasn't as amazing and all-curing as a lot of people think. He concurred that our bodies are all different and that if the Amitiza works better for me, then use it. He found in his personal practice a lot of patients have preferred Amitiza to Linzess.

T


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## flossy

*'These Are The Drugs Doctors Get Paid The Most To Promote'*

Click on below link to read:

http://www.businessinsider.com/what-drugs-are-doctors-paid-the-most-to-promote-2015-1

And at number 12? Linzess

I am not surprised. I worked at a pharmaceutical company for almost 5 years. My cousin is a pharmaceutical rep. It's all big business, as they say.


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## PastorCarol

Anybody around? I just missed my doctor by 2 minutes, and I am pretty stressed. Hopefully someone here can help me. I started on Linzess on Friday. First day, grinding and gurgling resulted in a huge, firm, banana-shaped stool. Second day, grinding, gurgling, and 3 huge, rapid-fire diarrhea incidents within an hour and several lesser ones afterward. Yesterday, I was so focused on what I was going to play for church that I honestly and truly forgot to take it. Today, I took it with my synthroid at 6 A.M. More grinding, gurgling, distention, but NO MOVEMENT at all. I have consumed enough water to sink a ship, and have eaten raisins throughout the day because I hate prunes and didn't have any apricots. I had gluten-free cheerios for breakfast and a sandwich for lunch. So here I am, 12 hours later, gurgling, grinding, distention and still no movement. I put on a surgical glove and gently felt up the rectum, and there is very definitely a stool there. Is there something obvious or easy that I am missing that could help? Really grateful in advance for any suggestions. And as you can see by my screen name, a few prayers would be greatly appreciated!


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## IBSsucks2

If you have some epsom salt (magnesium sulfate), try about a half teaspoon with about 16 oz of water and chug it down. I've found that things will usually get going in about 2-4 hours. (I believe that it also functions as an osmotic laxative (i.e., not a stimulant one).) Of course, this is just my advice and I am not a medical professional. I'm just passing along what I have done in the past. Hope you feel better!


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## flossy

PastorCarol said:


> Anybody around? I just missed my doctor by 2 minutes, and I am pretty stressed. Hopefully someone here can help me. I started on Linzess on Friday. First day, grinding and gurgling resulted in a huge, firm, banana-shaped stool. Second day, grinding, gurgling, and 3 huge, rapid-fire diarrhea incidents within an hour and several lesser ones afterward. Yesterday, I was so focused on what I was going to play for church that I honestly and truly forgot to take it. Today, I took it with my synthroid at 6 A.M. More grinding, gurgling, distention, but NO MOVEMENT at all. I have consumed enough water to sink a ship, and have eaten raisins throughout the day because I hate prunes and didn't have any apricots. I had gluten-free cheerios for breakfast and a sandwich for lunch. So here I am, 12 hours later, gurgling, grinding, distention and still no movement. I put on a surgical glove and gently felt up the rectum, and there is very definitely a stool there. Is there something obvious or easy that I am missing that could help? Really grateful in advance for any suggestions. And as you can see by my screen name, a few prayers would be greatly appreciated!


Hi Pastor Carol -

If after you try that for awhile and don't like it, I have been taking this for over a year now and like it (click on below link to read):

http://www.ibsgroup.org/forums/topic/239065-finally-a-product-i-can-recommend/


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## PastorCarol

Thanks ever so much! Around 20 minutes after I posted, the linzess finally kicked in. A little over 12 hours since I took it this morning! Huge blow-out, starting with a well-formed stool and then pure old diarrhea. I had about an hour of multiple trips to the bathroom before things have mostly quieted down. I have a whole box of epsom salts upstairs that I never thought of, and I will look into Dr. Schultze's products. I never thought to ask my gastro specialist, so perhaps you kind folks could answer what may be a "dumb" question: is the aim of linzess (assuming I continue taking it) to eventually be "regular" enough that I no longer have to spend part of each day with diarrhea?


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## flossy

PastorCarol said:


> Thanks ever so much! Around 20 minutes after I posted, the linzess finally kicked in. A little over 12 hours since I took it this morning! Huge blow-out, starting with a well-formed stool and then pure old diarrhea. I had about an hour of multiple trips to the bathroom before things have mostly quieted down. I have a whole box of epsom salts upstairs that I never thought of, and I will look into Dr. Schultze's products. I never thought to ask my gastro specialist, so perhaps you kind folks could answer what may be a "dumb" question: is the aim of linzess (assuming I continue taking it) to eventually be "regular" enough that I no longer have to spend part of each day with diarrhea?


There are many review for Linzess on this thread and many are negative ("it give me diarrhea!"). The only person I know who really seems to like it is 'LuvTheLoo' (Vince), who posts here very infrequently. I don't think he said it in this particular thread but he has been on it for quite some time now and he says he goes "about 22 times" (yes, literally) every morning, "gets it all out." To me? That is crazy!







My rectum would collapse! lol. But he said it works for him. That is about as close to an answer to your question I can muster.

P.S. I normally go between 2 and 4 times a day on Dr. Schultze's Intestinal Formula # 1. They are not 'miracle' pills but they do help a LOT, and they are all herbal.


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## aspyn

flossy said:


> There are many review for Linzess on this thread and many are negative ("it give me diarrhea!"). The only person I know who really seems to like it is 'LuvTheLoo' (Vince), who posts here very infrequently. I don't think he said it in this particular thread but he has been on it for quite some time now and he says he goes "about 22 times" (yes, literally) every morning, "gets it all out." To me? That is crazy!
> 
> 
> 
> 
> 
> 
> 
> My rectum would collapse! lol. But he said it works for him. That is about as close to an answer to your question I can muster.
> 
> P.S. I normally go between 2 and 4 times a day on Dr. Schultze's Intestinal Formula # 1. They are not 'miracle' pills but they do help a LOT, and they are all herbal.


I don't know if this will help anyone, but what works for me (everyone is different, obviously) is Amitiza 24mcg once a day at night (this gets around the nausea and heart palpitation side effects I get sometimes when taking it during the day) and occasional daytime dosage if needed. I also take VSL#3, one packet per day and follow a low FODMAP diet (for what I need, I have done elimination with this for a year and a half). With this I have BM's much more regularly. If I'm on a good schedule I'll have 1-2 a day (sometimes loose or diarrhea, but not with lots of urgency and not several a day). If I'm out of town or on an off schedule it really helps prevent me from getting super backed up and I'll have a BM every 1-3 days (compared to before when I'd go out of town and get totally backed up). I also eat a healthy diet and try to drink plenty of water. Definitely not perfect, not a miracle like flossy said, but it's worked the best so far of everything I've tried. I feel like it actually helps vs a lot of other things. I did take Linzess for 6 months but for me personally it just gave me way too much urgency and diarrhea. I was on Amitiza for years before Linzess and my doc wanted me to try Linzess once it came out to hopefully get around the Amitiza side effects. So it's a choice but I feel relatively comfortable with what I'm doing right now. Still working with my doc on options but better.


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## flossy

aspyn said:


> I don't know if this will help anyone, but what works for me (everyone is different, obviously) is Amitiza 24mcg once a day at night (this gets around the nausea and heart palpitation side effects I get sometimes when taking it during the day) and occasional daytime dosage if needed. I also take VSL#3, one packet per day and follow a low FODMAP diet (for what I need, I have done elimination with this for a year and a half). With this I have BM's much more regularly. If I'm on a good schedule I'll have 1-2 a day (sometimes loose or diarrhea, but not with lots of urgency and not several a day). If I'm out of town or on an off schedule it really helps prevent me from getting super backed up and I'll have a BM every 1-3 days (compared to before when I'd go out of town and get totally backed up). I also eat a healthy diet and try to drink plenty of water. Definitely not perfect, not a miracle like flossy said, but it's worked the best so far of everything I've tried. I feel like it actually helps vs a lot of other things. I did take Linzess for 6 months but for me personally it just gave me way too much urgency and diarrhea. I was on Amitiza for years before Linzess and my doc wanted me to try Linzess once it came out to hopefully get around the Amitiza side effects. So it's a choice but I feel relatively comfortable with what I'm doing right now. Still working with my doc on options but better.


Yes, from the reviews I've read here it seems like Linzess is just too harsh for most people.

'We are all searchin' for that miracle pill." - Nuffa


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## addywebb1

I have had IBS-C for some time now, I am 49 now and can't pinpoint when exactly it started as it seemed to creep up on me, but seem to have had this problem non-stop for at least 8-10 years. In the past I have tried adding Fiber to my diet and that only worked for a short time, and then all it did was produce a larger bowl movement that I couldn't pass. Laxatives or Epson salt will work, but they made me feel terrible until they worked, then after they worked I felt sick for a few days and I know these aren't good for you. However, I was desperate and would use them every third day just so I could go. I pretty much stopped eating everything, because I was afraid of not going. I can't eat fake sugar at all, and forget about eating something as silly as hard candy with regular sugar (such as a tootsie pop) or I will never go again. I can't even eat a Werther's hard candy or I will pay dearly. I don't know what I can eat, because there seems to be so much that causes a problem, such as, fake sugar, soy, wheat, dairy, meat (that I don't eat at all anymore, as it disgusts me as well) etc... etc... I have had a colonoscopy and it came back fine, thankfully, but on the other hand still no reason for the problem found. It seems to me that I just can't digest and pass food properly more than it being a certain food.

The doctor put me on Lizness and yes for me it is a miracle drug to some extent, because I can actually go to the bathroom daily with it. That said it does give me diarrhea and bloating, but that is not as bad as the constipation. I am a small girl 5'4" at about 115 pounds and I think the 145 dose is to strong for me. I have been on this medicine for about 1 month, and trying to skip days doesn't work for me at all. If I skip a day I am just as constipated as if I never took this medicine. I don't understand how I can have diarrhea, sometimes very bad from the Lizness one day, and not take the pill the next day and be so constipated and feel like I can't go all the way even if I have a bowl movement. That said I will take the diarrhea over the wishing I was put out of my misery so to speak, from not being able to go all the way. When I am like that I don't want to leave the house, my pants feel like they are killing me, and I am miserable to be around. My waist is about a 26" to 27", so I feel like the food has no where to go if I don't have a bowl movement everyday, and I have skipped eating when I am starving just so I don't fill up because I know I can't pass it later. I am to the point now that if I can't go I feel so bad I just cry in agony and misery.

I like the Lizness so much that I have decided to try a few of the suggestions I have read on here. I am going to buy some empty capsules from the pharmacy, and try splitting the pills in half to see if that dose would be enough to get me moving without so much bloating or diarrhea. I also get some of the headaches mentioned and the low neck pain, so maybe a lower dose would help that as well. I know I have to take a pill daily to get a result for each day, so I am hoping that maybe a lower dose will be the ticket to success with this pill for me. If not I will go back to the whole pill, as I will take these side effects any day over the constipation, and build up of waste that I need laxatives to get rid of.

I have also thought about taking the pill at night before bed as some have suggested, but think I will split the pills first and see what happens. I am hoping that this helps as I like the feeling of going with Lizness so much and can't go back to feeling so bad. I just can't believe that just one missed dose makes me feel so bad again, so depressing. I would think that a build up in my body of the medicine would help things for at least a few days after I quit taking them, but no such luck for me, the pill effects seem gone immediately for me.

Overall I will call Lizness a success for me, over anything else I have tried, and I have tried it all at this point. This is the first RX I have tried for my condition, so all other trials were over the counter. When I get backed up bad the only thing that works for me is nasty Epson salt, as I have tried laxatives that barely work, and suppositories and ememas don't work at all. How can an emema not work? Well they don't work for me. When I had my colonoscopy the prep I used did work, but I think that is like a strong version of Epson salt. I will update on if the half dose works better for me, but for right now Lizness is what I will continue to use until something better comes along. Personally I don't like taking medicines and have fought to stay off of this or any other RX in hopes of a natural cure, but that doesn't seem to be in the cards for me at this point.

Why did they have to ruin the food? Why did they have to genetically alter it so much, that I can't even digest it? I do remember a time when I could eat what I wanted and never think about bowl movements, then they had to change the wheat, soy and everything that was good about food and now thinking about bowl movements takes up way to much of my day! They need to go back to using the original seeds that are stored for only the very special people and get rid of the genetically altered slop seeds that are killing me and millions of others.


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## flossy

addywebb1 said:


> Why did they have to ruin the food? Why did they have to genetically alter it so much, that I can't even digest it? I do remember a time when I could eat what I wanted and never think about bowl movements, then they had to change the wheat, soy and everything that was good about food and now thinking about bowl movements takes up way to much of my day! They need to go back to using the original seeds that are stored for only the very special people and get rid of the genetically altered slop seeds that are killing me and millions of others.


Although I'm not 100% certain GMO's are the reason I have chronic constipation, I agree with you a zillion percent that may be the reason we have screwed-up digestive tracts... And let's not forget all the hormones that are pumped into chicken and other meat products...


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## flossy

P.S.

'Battle for humanity nearly lost: global food supply deliberately engineered to end life, not nourish it'

http://www.naturalnews.com/043995_human_civilization_processed_food_stealth_war.html


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## cangarrett1

I have been taking the lower dose of Linzess for about three months now. I started about two weeks after I recovered from gall bladder surgery. At first it didn't seem like there was any effect. After about a month it finally started to work. I was going about every other day, which was a vast improvement for me. Just about two weeks ago, I had extremely bad diarrhea but was fine about two days after that. But since that episode, I have noticed very loud and painful gurgling and gas sounds and movements in my abdomen. It's like that movie, "Alien." Nothing about my diet or lifestyle has changed, so I'm guess it may be the Linzess or possibly the gallbladder removal, or both.(?) Anyone have a similar experience?


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## steve1102

I have been on Amitiza for the past 2 years because my new Medicare Advantage plan wouldn't cover Linzess, which I had been on

for about 2 years for my IBS,(mostly due to using prescription narcotics). I have been experiencing some rather frequent

constipation over these past 2 years, because for me, Amitiza 24mcg. 2 x day does not work anywhere near as well as Linzess

145mcg. 1 x day. So, I have been needing to take Miralax, exlax, and sometimes magnesium citrate to assist the Amitiza with my

constipation. I just found out that my Medicare Advantage plan now, (FINALLY!) will cover Linzess. It's about time they woke up!!

I can't wait until I see my Dr. tomorrow and have him write me a prescription for Linzess. I understand that different meds work

differently for different people, but I am super-happy that my insurance FINALLY covers Linzess because it is super-expensive to

purchase without insurance. And for me, Linzess works excellently for my IBS-C due to Rx. narcotics.


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## Trummy18

Started Linzess 145mcg. Within hour went to bathroom. It is 7pm. Stomach feels spasmodic and uncomfortable. Had 4 bowel movements today after 7 days constipation due to 2 barium tests plus IBS-C. Read others feedback. It was helpful. I took nap to escape discomfort only to wake up with it again. I will remain optimistic. I don't want to feel like this 7 days a week so I might alternate take medication every other day. In bathroom gas sounds extra loud. I plan to go to bed early to escape side effects.


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## annie7

good luck with linzess.

hope the side effects go away soon--sometimes they do, once you body gets adjusted to the medication. take care.


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## msdldavies

O.k., so I'm new to this forum. I'm trying to determine if my symptoms are IBS-C. I've always had a problem a few times a year where I wouldn't have a bowel movement for a few days (about 3) where I normally would go every morning at the same time like clock work all of the other times. When this constipation occurred I'd end up on the toilet beginning to sweat like I had a fever, literally, and like I was going to pass out and throw up at the same time. It's like a plug would finally come out and then open the flood gates. But, thankfully it only happened a few times a year. Now for the past year my bowel movements changed. I did get diagnosed with bacterial colitis after an emergency colonoscopy (blood literally dripped out of my butt on to the bathroom floor). I no longer have them regularly, maybe once every few days and then when I do, they are not normal but almost like balls of clay stuck together in a longer poop. Sometimes it comes out like a thin long poop, too. At night, every night, I wake up at about 3 a.m. with this real uncomfortableness in my gut or intestine(?), soaking wet from sweating (but not my head like I had a fever) and nauseated. Sometimes I would even be laying there moaning because of it. And, it's difficult to get back to sleep again and I get up at 5 a.m. for work. Is this IBS-C? My doctor hasn't specifically said it is, just prescribed Linzness for me. I'm always exhausted, too. No energy at all. Also, I saw that some people started taking Linzness at night instead of in the morning before breakfast. Has that helped? My doctor wants me to take it in the morning. I've also read that others are in the bathroom very frequently. I'm already urinating in the mornings every 35 minutes for about 4 hours from the water pill I have to take with my blood pressure medication. I don't know that I could handle it coming out of both ways every day for a few hours.

Sorry about all the gross stuff I mentioned.

Any feedback would be appreciated. Just want to know I'm not dying from cancer.


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## Jasesun23

I'm have chronic constipation. Dr perscribed Linzess 145mg. Started it Tuesday and have taken it 3 days with no help in a bowel movement. It has been almost 7 days since my last bowel movement, so I was feeling very uncomfortable. Took it upon myself to take 2 pills this morning, 290mg, and about an hour after I had a movement. It was mostly diarrhea. Even though it wasn't a normal bowel movement I feel much better. I guess its the grass is always greener on the other side. In my mind I'd take diarrhea a couple times a day then to not have a bowel movement in over a week. I'm sure people who suffer from IBS-D would love to be constipated once in awhile.

Even though the 1 pill a day for the last 3 days did not help in having a bowel movement, it does help in other ways. It has stopped many other symptoms I was feeling. I feel less bloated, even after big meal. I don't burp like crazy after every meal. There is def less pressure in my ab region. Its only been 4 days and I'd say its been a positive experience for me taking this. I'm glad to take a break from all the laxatives I take. I will update as time goes on. I am also going to start a new thread just explaining my story


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## TMM388

Hi All, I take Linzess and sometimes it works, sometimes it doesn't, so I've started taking it every 2-3 days. Sometimes it works only somewhat. Is this because there is not a lot of stool in my colon due to my slow motility? I read someone's post above saying it's a bowel regulator. Should I take it every day even if it doesn't yield results each time?


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## annie7

unfortunately linzess doesn't work for everybody. when my gastro doc prescribed it, his instructions were to take it every day. that's what it says on the linzess website, too.

it could be that linzess isn't working well for you because you have slow colonic motility.

are you taking the 145 mcg dose or the 290mcg.

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 probably the more cleared out you'll get). so you might want to try taking it 10 or 15 minutes (or even less) before eating instead of 30 minutes as prescribed. or even take it with breakfast, not before. another thing that i found is that it works best if you eat a warm breakfast with some healthy fat in it.


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