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.

Interested in more discussions like this? Go to the Digestive Health Support Group.

@rka19

Thanks all. My GI doc put me on Citricil at night and Miramax in am. I do suffer with both. Once my stool plug comes out I have diarrhea at least 3 times during the day. I take no pre or probiotics. I only eat soda crackers when I need to leave the house. Do I doctor shop as mentioned Linzess and Amitiza. Been trying to control things for 2 years now.

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Anyone had success with the 2 week bowel evacuations program for DD at Mayo for non relaxing external sphincter? Any information would be appreciated? Hoping this can be resolved without drastic surgery?

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@rosemarya

Good Morning, @banks1025. I want to extend my Welcome to Connect to you. I see that you are a kidney transplant recipient and and as a transplant recipient myself, I know how our medications can act differently after our transplant. If you have not done so, please discuss this with your transplant team.

Here is the link to the transplant Support Group where others with organ transplants are sharing about their experiences. To make it easy for you as a new member, I am going to invite you to that group. You should be getting a notification from me that will take you diretly to that conversation. or you can use this link:
- What are other transplant recipients doing for constipation?
https://connect.mayoclinic.org/discussion/constipation-7/
I will look for you there.

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Taking Linzess for Dysergenic Defecation. Has anyone done the two week bowel evacuation program at the Mayo? Any information would be appreciated. I hope this is something I can be a candidate for or I am afraid I will end up on a bag system..,
Other people out there?

I can’t sleep every night due to pain and discomfort .

Any stories to share??

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I've had chronic constipation from the day I was born. More than a decade ago I was prescribed Linzess on 2 different occasions - both times at the higher dose. I didn't experience any pain or diarrhea, but the drug only worked until I ovulated or my period started. Then it was back to the same old constipated way of life. One gastroenterologist was so irritated by that that she told me she couldn't help me, talk to my gynecologist. I'm seriously fed up with PAs, NPs and MDs who won't look at my whole history of constipation and who think they can solve a lifelong issue with a single pill or "more water, more fiber, more exercise," especially when I tell them it's gotten 10x worse in the past few months. I wish you luck.

Here's my current regimen that is only mildly effective: 12.5mg MOVANTIK (I use a buprenorphine patch for spinal arthritis); 6 senna tabs/day (2 am, 4 pm); 400mg docusate sodium/day; 2-4 capfuls of Miralax/day; 3-4 doses of Citrucel/week (I may increase this to every day); 3-4 doses of mineral oil/ week; approx 1 gallon (4L) of fluids per day; as much fiber as I can cram into my stomach every day. This has gotten me to where I only need a mineral oil+warm water enema a couple times a month. Let me know what works for you. I'll give it a try.

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It isn’t the most pleasant but I have to rely on it. Sometimes it will cause diarrhea more some days than others. It can take 3-6 hours to be where I am comfortable leaving a toilet. For me it is better than the alternative of others. I can’t tolerate the fiber supplements because I get bloated and in pain.
Coffee I like to have because it helps in the morning. I try to drink 70 ounces plus of water a day and try not to eat terribly unhealthy but try not to eat huge amounts of gaseous food at the same time. I don’t want to take out all the nutritious food. The side effects can be miserable. Hard to maintain muscle and body weight when you are in the battle with your body.

I used to try super high fiber and it didn’t work either.
Normally I eat oatmeal with a tablespoon of Chia seeds in the morning. I don’t think this hurts.
Now I see I have the Celiac Gene but I don’t have celiac disease.

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@les2024

It isn’t the most pleasant but I have to rely on it. Sometimes it will cause diarrhea more some days than others. It can take 3-6 hours to be where I am comfortable leaving a toilet. For me it is better than the alternative of others. I can’t tolerate the fiber supplements because I get bloated and in pain.
Coffee I like to have because it helps in the morning. I try to drink 70 ounces plus of water a day and try not to eat terribly unhealthy but try not to eat huge amounts of gaseous food at the same time. I don’t want to take out all the nutritious food. The side effects can be miserable. Hard to maintain muscle and body weight when you are in the battle with your body.

I used to try super high fiber and it didn’t work either.
Normally I eat oatmeal with a tablespoon of Chia seeds in the morning. I don’t think this hurts.
Now I see I have the Celiac Gene but I don’t have celiac disease.

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I also supplement with fresh papaya when available to eat.

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Yes. I used Linzess but cramping was terrible. Used to take Zelnorm years ago till discontinued. Now I use Amitiza and stool softener As I can have more control over constipation. I can understand how it affects it seems, my whole life.

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Amitiza is the prescription drug for constipation caused by opioids. I don’t know about Amitiza but I do know about Linzess. I don’t take pain meds for my Lumbar arthritis and budging but I do use herb’s for inflammation. I take Linzess religiously every am at 5 with 4 big glasses of water and have to eat 30 min on the dot and drink two cups coffee also. Warm liquids like tea would be good also.The night before I take a powdered dose of the RDA of Mag citrate and a dose of miralax. Lots of water during the day and clean eating with high fiber and all together it works. Have to be careful with hyper-diluting your blood drinking all that water. My sodium can run low. I have to use lots of salt. No BP or kidney issues a must. Also, when the Linzess works it works. For me it can take up to three hours to poop!, LOL! No more eating out for breakfast😔. I go a little at a time. The water helps put pressure behind the kinks where scar tissue is from Many years of Endometriosis. I have had an exploratory lap surgery for lysis of adhesions in the past but only so much scar tissue can be removed without cutting a nearby vital organ like your intestines or bladder etc.

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I’m so thankful to hear that Linzess has been working for some of you. It worked for me initially, Then I realized that I have a redundant colon, and intermittent bowl blockage.

Which now is anything I consume blockage.
Tried 2x linzess but ins won’t cover

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@les2024

Taking Linzess for Dysergenic Defecation. Has anyone done the two week bowel evacuation program at the Mayo? Any information would be appreciated. I hope this is something I can be a candidate for or I am afraid I will end up on a bag system..,
Other people out there?

I can’t sleep every night due to pain and discomfort .

Any stories to share??

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My story , I’ve had 60 years of constipation, I’m 73 now and finally I think 🤔 I’m on top of it…
One daily sachet of cosmocol, that simply draws water into my long and torturous colon, so you can have 2 or 3 daily if required?
Plus a spoonful of inulin on cereals or whatever , which is simply chicory root fibre …Magic.
It’s like Xmas every day !!! I didn’t know what normal poops were really like till now.
Probably will cease up once every now and then which I can deal with suppository..
Also I have changed to a gluten free diet which I believe helps .
When you consider how long gluten stays in your colon !,,, glueing everything together ?
60 hours in a normal colon , probably twice as long in my longer colon 🤷‍♀️
It’s a win win ..
Hope this helps someone 😘
Best
Sheila

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@bb03

I use Mag Glycinate 140 mg that gives about 33% of your RDA at 11 am. Read the labels. Be careful not to take any meds or supple around the Mag doses because it inhibits absorption . It may say 500 but it’s not all the true dose. I then take at 8 PM a dose of Miralax and about 300 mg of Mag Citrate. I alternate a powdered form of the Mag Citrate with capsules depending on how busy I am. Powder works better. I don’t absorb well. I get my Mg levels and all my electrolytes checked about every 3-6 months and I am always mid level or at least in the normal range. I could use more Mag but I don’t take it. I do eat very well, I only eat white bread on Saturday my cheat day, and I splurge on a little sugared dessert too. I basically eat fruit, veggies, Greek yogurt, meat, fish, almond butter and the bread I make with coconut flour, coconut oil,almond milk, eggs and add ground flax, psyllium, and pecan meal and a few other things,like xanthum gum, and baking powder etc. It’s gluten free too. Oh lots of water and my Linzess every am. I had a Sitz Study and I had minimal movement to the marker once it was in my Colon. Even though my thyroid is now fairly regulated my gut moves slow because many years of endometriosis like I mentioned( scar tissue). I do the best I can to stay out of the hospital. I have a medical background which helps also.

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I do take Magnesium in capsule and powder form (myocalm). I used to take Mag Citrate only, but read that you should take a brand with a combination of the 3 types. Myocalm now comes combined with different types of Magnesium. I’m not sure if they still sell Mag Citrate form. I have severe colonic inertia. I take Linzess at night. It has never worked when taken in the morning but I never took it with 4 glasses of water in the morning. If it did work I’m afraid I would be going through out the day. I’ve had to also add Smooth Move tea, Seneca (pill or liquid) Prunella tabs, pre/post probiotics (Probulim). Miralax makes more bloated than I already am. One day things will work and another day or two nothing works. Done with GI because they want referral for surgery. At least my internal medicine doctor agrees with regarding no surgery. Would you please share your gluten free bread recipe? I completely failed the Sitz Marker Study. I think the test that I’ve had that was normal was an MR Enterograpy. I may try the Linzess in the morning as you suggested when I don’t have to be anywhere that day. Thank you for sharing.

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