Feedback on Linzess for Irritable Bowel-C or Chronic Constipation

That sounds very intense. Good luck with your surgery. I appreciate the tips.

I have had normal calcium levels twice since this started. And, I’ve discussed it with my Endocrinologist twice, who doesn’t think it’s any hormonal imbalance. What test would they use?

I do okay with 1 cap of daily Miralax. I just don’t think that should be required since I’m so healthy, except for post covid syndrome which occurred after my chronic constipation.

I'm glad you are in touch with an endocrinologist. Hyperparathyroidism can't be diagnosed with a one time test. It needs to have several sets of blood tests, calcium, vitamin D, and PTH, possibly other metabolic blood tests. Calcium is supposed to be tightly regulated by the PTH glands. Because low or high is bad. As I mentioned I have had 3 different dr. Opinions and did tons of my own research...cuz I knew nothing about HPTH, until it got tested 18 years ago, when my PCP couldn't find why my vit D was so low and my PTH was so erratic (32-188).
You are right, since you are healthy, you should not have to take any medication. Good luck with your hunt.

I had a high calcium blood test and my Internist sent me to a Thyroid/Parathyroid surgeon (that is all he does). He performed an ultrasound in the office and results showed one gland the size of a grape and the others were normal, size of a grain of rice. He removed the grape sized gland, and I had immediate results the next day from one of the symptoms and over a few months the others subsided. Good luck and know that all the crazy symptoms that make you wonder if you ARE crazy, because they come and go and don't all occur at the same time, will go away.

OH MY GOODNESS!!!!
You have no idea how desperately I needed to hear this today. I am scheduled for surgery in 2 weeks and I got yet another conflicting comment from a doctor. I have even had long exchanges with AI-POE, it's amazing how much solid evidence based info AI-POE is like another opinion.
Would you be willing to share what caused your dr to test your calcium, how high was your calcium, how long was it high, what was your vitamin D and PTH levels? Would you elaborate on the immediate symptom improvement, later improvements.
😇😇😇 you are the angel with info, that I needed. Thanx so very much Shelley

Took Linzess only twice 8 days apart. Also had gut pain -- feels like I was punched from the inside. Also caused urgent diarrhea for over 14 hours (that's on just 1 pill 145mcg), acid and horrible reflux while I slept. I reported it to the FDA. For me personally, the side effects and pain are not worth taking it. Hope you do better.

The exact same happened to me twice: once on prescribed dosage and once on 1/3 dose. Horrible Rx. It joined the 30+ others in my ever growing box of tried and stopped meds!

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.

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

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

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!!!!!