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Thread: A new way to fix constipation/ staying regular

  1. #1
    Senior Member
    Join Date
    Sep 2016

    A new way to fix constipation/ staying regular

    Hey everyone. I just wanted to let you guys in on a new thing my doctors have found to help with constipation issues. There is a med on the market that I'm sure you've heard of and seen commercials for called Linzess. It's made for Irritable Bowel Syndrome. A patient at my clinic who does Mirolax constantly wanted to try this to see if it would help keep her regular after doing some research. She begged one of the doctors to write a prescription for it and was able to get it. It's been successful for her and 35 other CF patients in my clinic. I have started taking it and have had no issues ever since. It's a pill you take once a day on an empty stomach and have to wait 30 mins after to eat. It beats having to do my 6 scoops of Mirolax a day or a big blow out once a month to maybe stay regular. The makers of this medicine and CF researchers are looking into why this works for us. They are finding that this med does more than what it was advertised to do. I wanted to let you guys know because this has been a game changer for me and many others. You guys might want to jump on board.

  2. #2
    Super Moderator
    Join Date
    Dec 2011
    Thanks. This is potentially good news. The amount of PEG, MiraLax's active ingredient, I absorb is either high or my kidneys don't like it. When I have to dose daily for more than 3-4 days, it's a toss up between dying from constipation or kidney pain. Double dosing MiraLax hasn't been possible for many years for the same reason.

    Many if not most CFers suffer from IBS anyway so it's not like prescribing for an unapproved ailment. I have run the gamut of GI drugs from paregoric and bismuth, (eeyuk!), through a museum of potions that mainly caused the cycle of diarrhea and constipating it was meant to remedy. Several people, myself included have been described as Poopologists. In my case I have been treated for over 50 years and have learned from interacting with doctors on self management of my dysfunctional gut. I've watched dozens of prescription drugs for IBS, IBD, Crone's, GERD, gastritis, ulcers, hyperacidity and such go from prescription to OTC. I know just about everything that a person can do to help with regular and healthy bowel movements. From reserving one or multiple times to sit and encourage a BM to adequate, balanced hydration, knowing and applying the list of good bowel habits found in any good home medical guide is adequate for majority of people with mild to moderate/serious problems.

    Being a self described authority on achieving toilet Nirvana, I'm by no means a master of my own gut. In CF, there is no such thing as a stable gut. As soon as I have a nice pliant stool and it appears that I have fixed my problem with regular, healthy stools, something changes and I am backed up with dry hard clay. For some, normal is abnormal and they have induced the condition. The gut can act like an alien presence using mind control to make you crave foods you don't need or are healthy.

    I just checked my stock of medicine samples and I have 20+/- Linzess. I am going to call my doctor and get his opinion and most likely be trying them. My overly detailed analysis of the potential GI problems suffered by CFers is my way of thanking you for sharing your information and underscoring the importance of a solution in the arsenal. Right now I am desperate for a solution, this could be it.

    Great Contribution, thank you,

    66 yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism appears to be virulent.

  3. #3
    Super Moderator
    Join Date
    Dec 2011
    WATCH OUT FOR LINZESS! I did see my GI specialist and was prescribed Linzess without my bringing Linzess up, he believed it would help. My visceral pain has gotten worse over the last year and I am prone to constipation due to IBS amongst other things like the medication for pain.

    I was hoping to become another happy customer but Linzess isn't a panacea for anyone and everyone. Something in the medication sheet caught my eye and it took about 40 hours of researching to find out what it could mean in terms of the CF patient. Linzess activates the CFTR gene! Oral ingestion has most of the medication going to target the epithelial cells in the small intestine. Epithelial cells in the duodenum and small bowel do more than produce more chloride channels and more mucus production whenever the CFTR genes are activated. A precursor hormone is released into the bloodstream that in turn produces secretin, the hormone that stimulates the pancreas to produce enzymes and sodium bicarbonate. In a non CFer, Linzess does a great job for the majority of people

    As Printer noted in a thread about controlling diabetes with diet alone, I still react to foods, fats in particular as if I had a functional, CF injured pancreas. Everything having to do with the eating to elimination process is either terribly painful, or terribly painful with nausea. I don't expect all CFers to react badly to Linzess, but the fact that activating of the CFTR gene(s) is not unlike hunger or the digestive process for me, but much worse.

    Linzess takes about two weeks to become effective. At three weeks I found myself with all the characteristics of a flare, something I was already fighting. My GI tract was bleeding from the extreme inflammation of my intestines, I found myself with acute pancreatitis in a pancreas that is atrophied and not functioning. Black tar like blood and occasional urgent need to go resulted in a splash of bright red blood.

    My conclusion after more research than I expected, it is very dependent upon the focus (penetration) of CF. GI dominant CF, maybe even my mutation set, made my visceral pain much worse. Bad enough that nearly 2 months after my last dose of Linzess, the improvement is very little.

    I don't want to discourage anyone from trying out Linzess but the fact remains that if you are prone to pancreatitis, have chronic pancreatitis or your gut is already quite inflamed, you might want to avoid trying it until more data is available.

    Last edited by LittleLab4CF; 01-31-2017 at 05:55 PM.
    66 yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism appears to be virulent.

  4. #4
    Thanks for further info LittleLab. I'm currently taking 2 caps of Miralax per day plus stool softener 2x a day and Reglan. GI and CF Dr's insist it's the best solution currently available. Will not suggest anything else.
    AMBER 26yrs CF (Double F508DEL) Married
    CFRD, Double Lung TX 3-13-07, Kidney TX 7-2-07
    G-Tube, insulin pump, & cochlear implants

    Amber's Blog- A Creative Newmie

    God is within her, she will not fall -Psalm 46:5

  5. #5
    Junior Member
    Join Date
    May 2017
    Hi there,
    Do anyone of you know that a supplement can also help in fixing the constipation? Surprisingly, there has been a supplement know as the candle nut to cure this problem. My cousin usually suffers from the constipation when ever he is out of town. An article about the nut and its positive reviews made us believe that it is really very useful product to use. After using the nut as per the instruction, he never get the same problem again. You can dig this for more information about the nut and can even order it for yourself to get rid of the constipation problem.

  6. #6
    Hi Guys, I just thought I'd offer up a suggestion for a product that I came a crossed a few years ago that I've found to be a big help. I usually take 2 to 5 capsules before bed when I'm having issues. Aerobic life Meg07

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