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.

Explosive diarrhea. Could not go anywhere for fear of shitting myself. Awful.

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Profile picture for traceywinters @traceywinters

Explosive diarrhea. Could not go anywhere for fear of shitting myself. Awful.

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Hi, @traceywinters, and welcome to Mayo Clinic Connect. I've had some explosive diarrhea with taking semaglutide (Wegovy) and felt concerned that it might get out of hand. I'm so sorry you are dealing with the fear of going in your pants. I can only empathize and say I really know that terror.

Do you have IBS-D or another diagnosis, traceywinters?

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Profile picture for Lisa Lucier, Moderator @lisalucier

Hi, @traceywinters, and welcome to Mayo Clinic Connect. I've had some explosive diarrhea with taking semaglutide (Wegovy) and felt concerned that it might get out of hand. I'm so sorry you are dealing with the fear of going in your pants. I can only empathize and say I really know that terror.

Do you have IBS-D or another diagnosis, traceywinters?

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IBS-C. Add in moderate size diverticuli in sigmoid colon. Going another route. Started Vital Gut Renew for intestinal lining support yesterday. Cut out the dairy group to start with and will introduce each food from that group one at a time, then go to the next food group. It will take a long time, but I am willing to put in the effort. I am not a fan of prescription drugs to begin with, but I have had some doozies in my time. I wouldn't doubt that the powerful antibiotics that were administered to me during my diverticultis attacks have wrecked my innards.

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I’ve used Linzess on and off for 20 years +.I haven’t had any problems with it, only success! I’ve had IBS C/D for over 20y, and it is the only thing that has helped! Then I had surgery for GERD & hiatal hernia. I’ve been left with all sorts of problems that you wouldn’t believe? I have Gastroparesis (they think?), from the Nissen Fundoplication I had twenty one years ago! It was taken down to a Toupee Fundoplication . It worked for a little while on and off. I had to have my esophagus dilated over eleven times! Each one worked for a few too! Now it’s acting up. I would like it to be totally undone, for my sanity I will try to get a referral to a surgeon and hope they can do it, otherwise I’ll either get a second opinion or as many as it takes! This one procedure has made my life a living nightmare, I think it should be outlawed in all 50 states! This is no quality of life? I hope I can get a second or third opinion up at USD, UCLA or Cedar’s Sinai, and definitely to Mayo!

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Profile picture for ladybee50 @ladybee50

I’ve used Linzess on and off for 20 years +.I haven’t had any problems with it, only success! I’ve had IBS C/D for over 20y, and it is the only thing that has helped! Then I had surgery for GERD & hiatal hernia. I’ve been left with all sorts of problems that you wouldn’t believe? I have Gastroparesis (they think?), from the Nissen Fundoplication I had twenty one years ago! It was taken down to a Toupee Fundoplication . It worked for a little while on and off. I had to have my esophagus dilated over eleven times! Each one worked for a few too! Now it’s acting up. I would like it to be totally undone, for my sanity I will try to get a referral to a surgeon and hope they can do it, otherwise I’ll either get a second opinion or as many as it takes! This one procedure has made my life a living nightmare, I think it should be outlawed in all 50 states! This is no quality of life? I hope I can get a second or third opinion up at USD, UCLA or Cedar’s Sinai, and definitely to Mayo!

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Hi, @ladybee50. Welcome to Mayo Clinic Connect. I'm sorry to hear about all the problems you have since the Nissen fundoplication.

If you are interested in talking to others who've specifically chatted about the Toupet fundoplication, you might look at this discussion: https://connect.mayoclinic.org/discussion/input-on-toupet-fundoplication/

What is your next step? Will you be seeking an opinion at one of the institutions you mentioned?

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Profile picture for ladybee50 @ladybee50

I’ve used Linzess on and off for 20 years +.I haven’t had any problems with it, only success! I’ve had IBS C/D for over 20y, and it is the only thing that has helped! Then I had surgery for GERD & hiatal hernia. I’ve been left with all sorts of problems that you wouldn’t believe? I have Gastroparesis (they think?), from the Nissen Fundoplication I had twenty one years ago! It was taken down to a Toupee Fundoplication . It worked for a little while on and off. I had to have my esophagus dilated over eleven times! Each one worked for a few too! Now it’s acting up. I would like it to be totally undone, for my sanity I will try to get a referral to a surgeon and hope they can do it, otherwise I’ll either get a second opinion or as many as it takes! This one procedure has made my life a living nightmare, I think it should be outlawed in all 50 states! This is no quality of life? I hope I can get a second or third opinion up at USD, UCLA or Cedar’s Sinai, and definitely to Mayo!

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Have you tried Trulance...just a suggestion.. but nothing worked for me and Trulance does..and Miralax.. and VSL3 probiotics.. I'm so sorry you are going thru all of this..it's so frustrating and disheartening..you've been thru soo much (much more than me.. I will pray for you!!) Never give up!! Your breakthru is around the corner..

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Profile picture for ladybee50 @ladybee50

I’ve used Linzess on and off for 20 years +.I haven’t had any problems with it, only success! I’ve had IBS C/D for over 20y, and it is the only thing that has helped! Then I had surgery for GERD & hiatal hernia. I’ve been left with all sorts of problems that you wouldn’t believe? I have Gastroparesis (they think?), from the Nissen Fundoplication I had twenty one years ago! It was taken down to a Toupee Fundoplication . It worked for a little while on and off. I had to have my esophagus dilated over eleven times! Each one worked for a few too! Now it’s acting up. I would like it to be totally undone, for my sanity I will try to get a referral to a surgeon and hope they can do it, otherwise I’ll either get a second opinion or as many as it takes! This one procedure has made my life a living nightmare, I think it should be outlawed in all 50 states! This is no quality of life? I hope I can get a second or third opinion up at USD, UCLA or Cedar’s Sinai, and definitely to Mayo!

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Thank you for this post. My BF recently had Nissan fundoplication whilst undergoing hernia surgery. He failed a test so was dismayed to find he had been given a partial...i'll show him your post. His quality of life is also now greatly diminished. He suffers extensive gastroparethesis and terrible nausea which is debilitating. Gd luck !

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Profile picture for standinginfaith @standinginfaith

Oh my goodness!! Have you tried the Trulance?? And I also Miralax every PM at dinner with a full glass of water..some days it might take 2 doses of Miralax.. somedays I can go without..and I do try to drink 3 bottles of water a day..and eat one Thomas Multigrain English Muffin (the wheat one has sucralose..a gut bacteria no-no) with Country Crock plant butter every night..(8 gr fiber) and 2 Vanilla Plant based Ensures a day (5 gr fiber each) and a VSL3 Probiotic..daily.. good probiotic..Amazon has them.. have to be refrigerated.. they ship them really well with I think it's dry ice..pricey.. but really worth it.. I pray some of this helps you!!

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I have been on trial de now for three months. I a take it at night . It has been very effective, but I have extreme bloating and gas. Any advice how to deal with the negative side effects?

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