1. < Digestive Health

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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rka19 | @rka19 | Oct 20 10:27am
In reply to @heyjoe415 "Yeah the one thing we all have in common is the many, many ways we have..." + (show)
@heyjoe415

Yeah the one thing we all have in common is the many, many ways we have tried to deal with CIC, or IBS, or any other GI malady.

I've been on Motegrity for a year, but have to supplement with Dulcolax which I shouldn't do and - well Dulcolax does what Motegrity is supposed to do. Frustrating. I've tried Linzess and, nothing, nothing at all. Clearly these meds can have drastically different outcomes on different people. Approach all potential solutions with caution!

The best thing we can do is support each other with what we've found to work, and what doesn't work. It's one big game of trial and error. Except it's not a game. Well I'm grateful for you and all the other people who post here.

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I need to share my Dx. For 3 years I had IBSC or that is what 4 GI docs told me. Diarrhea all those years, explosive. Linzess and Amotiza with no help. Always a change of clothes and wet wipes everywhere I was brave enough to go. Being an RN I had to throw a small fit to have lab look at celiac, gluten intolerance and pancreatic cancer, although I have no pain except right before my explosive bowel eruptions, night after night. Malnutrition was also an issue.
Well, I have been missing enzymes for 3 years. My mother had colorectal cancer. Exocrine Pancreatic Insufficiency.
ZERO enzymes from a diseased pancreas . None for 3 years. Colonoscopy found 2 polyps, endoscopy shows polyps everywhere. Polyps on kidney, stomach and left upper quadrant liver concerns. My pancreas is double triple polyped engulfed. Yipes…5 polyps excised from stomach with endo #2. 2 adenocarcinoma. 3 reporting negative. Placed on Bentyl an pancrelipace 36,000 units, costing me $614per Rx. My liver was ok by MRI.

My concern is….the clinic at The Ohio State University sends me home using same meds and have Endo again in a year. Should I be scared to live with cancerous polyps for 12 months? Should I get a second opinion at The Cleveland Clinic??? Should I trust my Clinic physicians in Columbus. Just because I’m 71 should not change my prognosis for treatment. How would you react telling me to go home and see you next years for another endoscopy. ... Frightening. !!!
Any additional ways/treatments to be proactive.??
RKA19

REPLY
1 reply
margaretsmith328 | @margaretsmith328 | Oct 21 8:55am

Hi. I also tried Linzess. I was constantly going to the bathroom. My Colorectal dr advised me to stop taking it.

REPLY
lsdd13 | @lsdd13 | Oct 22 9:51am
In reply to @rka19 "I need to share my Dx. For 3 years I had IBSC or that is what..." + (show)
@rka19

I need to share my Dx. For 3 years I had IBSC or that is what 4 GI docs told me. Diarrhea all those years, explosive. Linzess and Amotiza with no help. Always a change of clothes and wet wipes everywhere I was brave enough to go. Being an RN I had to throw a small fit to have lab look at celiac, gluten intolerance and pancreatic cancer, although I have no pain except right before my explosive bowel eruptions, night after night. Malnutrition was also an issue.
Well, I have been missing enzymes for 3 years. My mother had colorectal cancer. Exocrine Pancreatic Insufficiency.
ZERO enzymes from a diseased pancreas . None for 3 years. Colonoscopy found 2 polyps, endoscopy shows polyps everywhere. Polyps on kidney, stomach and left upper quadrant liver concerns. My pancreas is double triple polyped engulfed. Yipes…5 polyps excised from stomach with endo #2. 2 adenocarcinoma. 3 reporting negative. Placed on Bentyl an pancrelipace 36,000 units, costing me $614per Rx. My liver was ok by MRI.

My concern is….the clinic at The Ohio State University sends me home using same meds and have Endo again in a year. Should I be scared to live with cancerous polyps for 12 months? Should I get a second opinion at The Cleveland Clinic??? Should I trust my Clinic physicians in Columbus. Just because I’m 71 should not change my prognosis for treatment. How would you react telling me to go home and see you next years for another endoscopy. ... Frightening. !!!
Any additional ways/treatments to be proactive.??
RKA19

Jump to this post

I would definitely get a second opinion. Send your pathology reports to Mayo, Cleveland or a Cancer institute. When my polyps showed severe dysplasia , I was on a 3 month watch with endoscopy with ultrasound. Once I showed no dysplasia, I m on a one year watch. I meet with a surgical oncologist who reviews the pathology to clear me . If not clear, I would be referred for a whipple. ( ugh)
Don’t take any chances with something so close to your pancreas!!!!!

REPLY
rka19 | @rka19 | Oct 22 11:38am

Being an RN, my concerns were worrisome. To know cancer exists in your intestines and pancreas engulfed with polyp on polyp. The Cleveland Clinic is 4 hours away. I should go somewhere. Your reply has my directed thoughts to a second opinion Thank you for your share RKA19

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