Cystic Fibrosis News Today Forums Forums Support Groups Adults​ ​With​ ​CF Staying hydrated – a constant struggle

  • tim-blowfield

    Member
    November 13, 2020 at 6:37 pm

    This is a huge issue involving both water AND electrolytes. Huge doses of salt (often 6 gm a day) are usually recommended for persons with CF. However this poses problems for some such as my wife who lost her large intestine nearly 20 years ago (from CF ) and has Cardiomyopathy (most probably the result of CF). She has had her CF Physicians and Cardiologists at loggerheads over salt and fluid intake. On top of that having an Iliostomy means that dehydration predisposes her to an acute intestinal blockage.
    The Iliostomy also affects the intake of other electrolytes. Without supplementary Potassium hypokalaemia develops. The usual Potassium supplements slow release tablets such as Slow-K end up in the Ileostomy bag without releasing adequate amounts of Potassium (They are designed to slowly release Potassium while in the large intestine). The alternative is an effervescent product, Chlorvescent, but with high bicarbonate it was not tolerated. We did find Potassi, a mixture of 4 Potassium salts with about 200mg Potassium per tablet, which is absorbed before it leaves the small intestine.
    Some Magnesium may also be needed.
    More research into electrolytes both inside and outside the CF cell is needed. Little is published on the effect the faulty CFTR protein has on intracellular electrolytes.

Log in to reply.