Feedback on Linzess for Irritable Bowel-C or Chronic Constipation

Posted by sue225 @sue225, Mar 9, 2019

I have both of the above-conditions. Took Linzess, (called Constella in Canada) and got terrible stomach pain. Feeling desperate and thinking about trying it one more time. Interested in hearing what kind of experiences other people have had with linaclotide/linzess.

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Profile picture for standinginfaith @standinginfaith

Linzess did NOT work for me.. and actually made me sort of sick..I'm on Trulance..andVSL-3 probiotics..miralaxing occasionally when I have a reaction to food or medication..then I might MiraLAX 3 times a day.. don't want to go to ER anymore for this!! Also prune juice helps and pear juice (but pear juice can really hurt your stomach if you drink it on an empty stomach..ouch!!) I think it has alot more sorbitol than prune juice..tastes better for sure!! And yes small meals several times a day.. and lots of water!! Prayers for you!!

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@standinginfaith i use warm prune juice with a tablespoon of butter all melted in and that works and the amount of prune juices like around six ounces

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Profile picture for irenec @irenec

I tried 145 mg. And had bad diarrhea so Dr. Tried 72 me. And what a difference. It's been a blessing. Plus some days I can skip a dose. So very important to follow directions. 1/2 HR before first meal.

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@irenec

Hello, @irenec ,
I have had IBS-C for years.
I was taking Motegrity and Senna. The Motegrity worked great the first couple of months. Then it started to work less and less. It actually started to make me feel ill. My gastroenterologist prescribed Linzess. Although the dosing information says to take four capsules daily for IBS-C, the doctor said to start with one capsule (72 mcg). So, I started today. I am not taking the senna. I am expecting 72 mcg to not be sufficient for me. Any thoughts, experiences, recommendations?

Do you have IBS-C? I hope 72 mcg Linzess is still working for you. Thanks so much!

Mark

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Profile picture for cezanne @cezanne

@cardigan Yes, with different issues at once it is challenging. I concur with your approach: small, bland meals. Sweet potatoes work well for me.

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@cezanne small meals can help, especially milder, softer ones…beware of overloading fiber…try ‘new’ food items carefully…hydrate well…good luck !🍀

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Seven years later. No longer feeling desperate. Sennokot every 2nd day and sometimes in combo with Dulcolax chews. Acceptance has its virtues.

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Profile picture for mark1952 @mark1952

@irenec

Hello, @irenec ,
I have had IBS-C for years.
I was taking Motegrity and Senna. The Motegrity worked great the first couple of months. Then it started to work less and less. It actually started to make me feel ill. My gastroenterologist prescribed Linzess. Although the dosing information says to take four capsules daily for IBS-C, the doctor said to start with one capsule (72 mcg). So, I started today. I am not taking the senna. I am expecting 72 mcg to not be sufficient for me. Any thoughts, experiences, recommendations?

Do you have IBS-C? I hope 72 mcg Linzess is still working for you. Thanks so much!

Mark

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@mark1952
The GI docs in my area do not treat ibs. Reflux meds make my ibs worse and created spots on my lungs. I got linzess from the pulmonologist, 145 mcg. It worked the first 2 days and then nothing. The pulmonologist referred me to a GI doc in a nearby city but they said they wouldn’t take anyone who had seen a GI doc in the past 2 years.

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Profile picture for jacquejwal @jacquejwal

@mark1952
The GI docs in my area do not treat ibs. Reflux meds make my ibs worse and created spots on my lungs. I got linzess from the pulmonologist, 145 mcg. It worked the first 2 days and then nothing. The pulmonologist referred me to a GI doc in a nearby city but they said they wouldn’t take anyone who had seen a GI doc in the past 2 years.

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@jacquejwal

Sorry for your frustrating experience, Jacque. IMHO, there are many life destroying issues gastroenterologists don't treat. Or if they do "treat" them, the treatment consists of capturing what the patient has been doing on their own (using their Scribe app) and then spitting it back to the patient verbatim in an "After Visit Summary," with no value add. They all have an interest in doing colonoscopies and endoscopies. I get it. I can do the math. Thank goodness for sites like Mayo Clinic Connect!

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TRULANCE and IBSREALA
They may have a financial assistance program
VERY expensive
Try Senekot dual action
Drink plenty of water at least 90 oz a day
Constipation is due to dehydration especially if you live in an arid enviroment
Look into the FODMAP diet!!!

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Profile picture for mark1952 @mark1952

@irenec

Hello, @irenec ,
I have had IBS-C for years.
I was taking Motegrity and Senna. The Motegrity worked great the first couple of months. Then it started to work less and less. It actually started to make me feel ill. My gastroenterologist prescribed Linzess. Although the dosing information says to take four capsules daily for IBS-C, the doctor said to start with one capsule (72 mcg). So, I started today. I am not taking the senna. I am expecting 72 mcg to not be sufficient for me. Any thoughts, experiences, recommendations?

Do you have IBS-C? I hope 72 mcg Linzess is still working for you. Thanks so much!

Mark

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@mark1952 I too have had IBS-C for most of my life (I am 73). I also have redundant colon (never diagnosed until my 60s during a routine colonoscopy). I took Linzess 290 mg for about 3 yrs plus other OTC stimulants…psyllium etc. I never really experienced any great help with Linzess…except mentally I felt like I was at least doing something medically about it. I finally stopped it a couple of months ago and I’m actually feeling a lot better these days with 1 cap of MiraLAX daily along with one scoop of Sunfiber. I mix both in one cup of coffee and enjoy! I sometimes add Senna if I need to feel more movement coming along. Feels good not spending a lot of $$ on an RX that was not proving helpful. Hope my info is of help.

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Profile picture for anniewee @anniewee

@mark1952 I too have had IBS-C for most of my life (I am 73). I also have redundant colon (never diagnosed until my 60s during a routine colonoscopy). I took Linzess 290 mg for about 3 yrs plus other OTC stimulants…psyllium etc. I never really experienced any great help with Linzess…except mentally I felt like I was at least doing something medically about it. I finally stopped it a couple of months ago and I’m actually feeling a lot better these days with 1 cap of MiraLAX daily along with one scoop of Sunfiber. I mix both in one cup of coffee and enjoy! I sometimes add Senna if I need to feel more movement coming along. Feels good not spending a lot of $$ on an RX that was not proving helpful. Hope my info is of help.

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@anniewee

Annie,
Input like yours is invaluable to me! Thank you for your generosity in sharing.

BTW, I am 74 and was recently diagnosed with a redundant sigmoid that my gastroenterologist described as the longest and most twisted ("torturous") he has ever seen. I am sure that plays a part in my condition. But with IBS-C I think a sigmoid resection might be impossible for me to deal with. Still debating. Thanks again.
Mark

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