Feedback on Linzess for Irritable Bowel-C or Chronic Constipation

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!!!!!

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

Raging diarrhea

I too have had chronic constipation for most of my 77 years. Trialling Constella which is not yet readily available in Australia. It has to be imported from Canada and made into capsules by a compounding pharmacist at a cost of $AU300 p/m. I’ve been on it one month and find it preferable to taking 4-6 Ducolax p/n plus 34x2 mg of Osmolax before bed and again before breakfast. A massive amount of ‘draino’ as I call it, which most days gives me a good clean out. My gastroenterologist said to do whatever it takes to keep it moving, otherwise I get an impacted bowel necessitating a ‘pump out’ under anaesthetic. Constella does not work for me on its own, I add 2-4 Ducolax at night and one Constella before breakfast. This regimen has been quite successful although sometimes hit and miss. And much more preferable to the vast quantities of draino. However, I do experience a little pain occasionally, though less bloating than previously. I eat a very healthy diet, and exercise daily. Like some I have ‘a long and tortured’ bowel, and a lot of adhesions from too much abdominal surgery. I hate the fact that my bowel is constantly front and centre of my mind, so I took up meditation some years ago. Most helpful. Of course anxiety feeds constipation, and I have C-PTSD.
I’m interested to hear others’ experiences with Constella. My gastroenterologist is tracking my reactions in the hope that, if successful, it will be supplied by the hospital at a much reduced cost. And perhaps the Australian TGA will consider making readily available on prescription.