• Profile photo of jessyktjessykt
    Member
    #171205161883

    I drink a lot of acai juice and take a lot of fish oil. Make sure you’re hydrated.

    The next part isn’t conventional and I don’t know if I should even share. I’m just telling you what works for ME, and I’m over 21.

    I have 1-2 alcoholic drinks a night. If I don’t, I don’t go. Haven’t drank in a week and my belly’s getting big, so I had two lemonades with sweet tea vodka last night and wah-lah, I just got out of the bathroom!

    Don’t know what I’ll do when I’m admitted though…they like golytly and hospital enemas. I swear nothing works as well as a nightcap.

    Profile photo of jessyktjessykt
    Member
    #171205294221

    I drink a lot of acai juice and take a lot of fish oil. Make sure you’re hydrated.

    The next part isn’t conventional and I don’t know if I should even share. I’m just telling you what works for ME, and I’m over 21.

    I have 1-2 alcoholic drinks a night. If I don’t, I don’t go. Haven’t drank in a week and my belly’s getting big, so I had two lemonades with sweet tea vodka last night and wah-lah, I just got out of the bathroom!

    Don’t know what I’ll do when I’m admitted though…they like golytly and hospital enemas. I swear nothing works as well as a nightcap.

    Profile photo of amstenzelamstenzel
    Member
    #171205161846

    I had all conventional CF GI drugs stop working for me gradually since Feb 2009. Enzymes, miralax, golytely, etc just stopped working. It was a mystery and miserable. I used MILK OF MAGNESIA instead and that helped some. But in Aug 2011 I was diagnosed withsmallBowel cancer- thatwas the culprit. I had surgery to resect the tumor and am on preventative chemo for six months- not that bad- nohair loss or nausea. All my symptoms resolved after the surgery and miralax works great now. I had 2CT scans of the abdomen in 2010 and 2011and they didn’t see the tumor (4cm)because it was buried in my small bowel. I would suggest that if you are really constipated and experience a change in bowel symptoms including not responding to conventional meds, ask your doc for some GI scans. I read that CF folks and CF carriers have a 6.5% increased risk in bowel cancer so symptoms should not be ignored or passed as just “CF”. My mom had bowel cancer due to her CF gene 15 years ago and is fine. Also I was very anemic, which is a sign of internal bleeding due to a tumor, and that was ignored as related to CF too. The chance that your problem is cancer is REALLY Low but I just want to spread the word and put that on people’s radar. Good luck!
    ANA STENZEL , age 39 , CF, lung transplant

    Profile photo of amstenzelamstenzel
    Member
    #171205294190

    I had all conventional CF GI drugs stop working for me gradually since Feb 2009. Enzymes, miralax, golytely, etc just stopped working. It was a mystery and miserable. I used MILK OF MAGNESIA instead and that helped some. But in Aug 2011 I was diagnosed withsmallBowel cancer- thatwas the culprit. I had surgery to resect the tumor and am on preventative chemo for six months- not that bad- nohair loss or nausea. All my symptoms resolved after the surgery and miralax works great now. I had 2CT scans of the abdomen in 2010 and 2011and they didn’t see the tumor (4cm)because it was buried in my small bowel. I would suggest that if you are really constipated and experience a change in bowel symptoms including not responding to conventional meds, ask your doc for some GI scans. I read that CF folks and CF carriers have a 6.5% increased risk in bowel cancer so symptoms should not be ignored or passed as just “CF”. My mom had bowel cancer due to her CF gene 15 years ago and is fine. Also I was very anemic, which is a sign of internal bleeding due to a tumor, and that was ignored as related to CF too. The chance that your problem is cancer is REALLY Low but I just want to spread the word and put that on people’s radar. Good luck!
    ANA STENZEL , age 39 , CF, lung transplant

    #171205161823

    have you ruled out gastroparesis?? i just got diagnosed with that. i havent started taking anything for it yet though. Also, i take 24mg of amitiza(libiprostone) 2xs daily with a cup of mirilax a day…or lactulose if that just isnt working…lactulose works AMAZINGLY…BUT i only take it at night because i get really bad stomach pains if i do in the morning or during the day. magnesium citrate i take 1-2 times a month…..you MIGHT need to go into the doc and take some golytely if the lactulose doesnt work for you.

    #171205294170

    have you ruled out gastroparesis?? i just got diagnosed with that. i havent started taking anything for it yet though. Also, i take 24mg of amitiza(libiprostone) 2xs daily with a cup of mirilax a day…or lactulose if that just isnt working…lactulose works AMAZINGLY…BUT i only take it at night because i get really bad stomach pains if i do in the morning or during the day. magnesium citrate i take 1-2 times a month…..you MIGHT need to go into the doc and take some golytely if the lactulose doesnt work for you.

    Profile photo of IncomudroxIncomudrox
    Member
    #171205161760

    Maybe look into getting Haritaki as it also destroys biofilms (the film that protects germs in our lungs) but more known to help with regularity.

    Link here

    Profile photo of IncomudroxIncomudrox
    Member
    #171205294117

    Maybe look into getting Haritaki as it also destroys biofilms (the film that protects germs in our lungs) but more known to help with regularity.

    Link here

    Profile photo of scanboydscanboyd
    Participant
    #171205161755

    Being well hydrated works for me! Good luck!

    Profile photo of scanboydscanboyd
    Participant
    #171205294112

    Being well hydrated works for me! Good luck!

    Profile photo of imported_Momto2Momto2
    Participant
    #171205161745

    Prunes. Many of them. Several times a day. And drink lots of fluids. Eat high fiber foods.

    ddf508, diagnosed at 3 months in 1971, CFRD, GERD, Gout, FEV1 24%. Married 20 years, 2 daughters 10 and 14. Undergoing Eval at Duke for lung transplant.

    Profile photo of imported_Momto2Momto2
    Participant
    #171205294106

    Prunes. Many of them. Several times a day. And drink lots of fluids. Eat high fiber foods.

    ddf508, diagnosed at 3 months in 1971, CFRD, GERD, Gout, FEV1 24%. Married 20 years, 2 daughters 10 and 14. Undergoing Eval at Duke for lung transplant.

    #1747176

    I have been taking miralax everytime I eat and its not really cutting it for me this is like the 2nd time i have had these problems , doc did a K.E.Vand told me what i already knew, they also gave me some magnesium citrate but it did nothing but give me gas , any suggestion on how to get thing running normally again?

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