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www.HereditaryColonCancerFoundation.org and www.HCCTakesGuts.org are informational and support websites for those affected by hereditary colon cancer syndromes. The website does not provide medical advice, recommend or endorse health care products or services, or control the information found on external websites.

 

Hereditary Colon Cancer Foundation and the Familial Adenomatous Polyposis Foundation are registered charitable organizations in Illinois and Utah, and tax-exempt under Internal Revenue Code Section 501(c)(3). Mailing address: 3519 NE 15th Avenue, Unit 518, Portland, OR 97212  |  info@HCCTakesGuts.org

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    Attenuated FAP, Cowden Syndrome, Familial Adenomatous Polyposis, Gardner Syndrome, 

    Hereditary Mixed Polyposis, Juvenile Polyposis Syndrome, Lynch Syndrome, Muir-Torre Syndrome, MYH-Associated Polyposis, Peutz-Jeghers Syndrome, Turcot Syndrome

    Patient Wisdom

    By God's grace, I haven't developed a polyp since my surgery (two years ago). Typically I take 4 grams of fish oil and 1200 mg of calcium a day. - Brian Hanson

     

    Metamucil Twice a day - 1 tbsp in 4 oz water after first and last meal. One tablet of Imodium prior to bed. - Anonymous

     

    I take an extra D and B complex, and iron. I do have vitamin deficiency’s which went undressed for several years! - Anonymous

     

    I try to ingest liquid nutrients as much as I can. And I start my day with SPARK from Advocare and liquid vitamins. - Michelle Sutter

     

    Not yet. Trying turmeric and Zyflamend at the moment. Ask me in a year! - Nathan Anderson

     

    I take Chlorophyll every day to help with digestion and the replacement of the leafy green vegetables. - Anonymous

     

    Metamucil. No colon means no water adsorption. Metamucil is my sponge. - Ed Minor

     

    I use all Visalus products and eat a normal diet as well. - Kari

     

    Granted that Shawn and I are little more 'California' than most, there are several supplements that I have noticed help me tremendously. Here they are in no particular order. - Travis Bray

     

    1. VSL#3 - this probiotic was developed for people with IBS and J-pouches. I can easily tell when I forget to take it. I take two every morning and am confident that it helps in the absorption of nutrients troughout the day.

    2. Floradix - a vegan, gluten-free, natural source of Iron and B12 in liquid form. B12 is absorbed towards the end of the intestines and can be an issue for colon-less people. I take a good plug every morning before I eat breakfast. Floradix is, perhaps, my favorite find. 

    3. Spirulina and Chlorella - blue-green algaes especially adept at detoxing the body and promoting the growth of healthy intestinal flora. They are also a great source of basic RNA and DNA fragments, which the body can harvest, amino acids, B12, and a littany of other nutrients and vitamins. We add it to smoothies and, sometimes, make a tea out of it.  

    4. EPA-heavy fish oil. Show to promote a healthy intestine and, possibly, prevent polyp growth. 

    5. Wellness Formula daily supplement - the intestines is our immune system. Remove part of it and you remove part of your natural ability to fight illness. Wellness Formula is high in zinc, which promotes a healthy immune system. 

    6. Goldenseal - a natural antibiotic keen on fighting bad intestinal bacteria. I take it to prevent pouchitis. 

     

    I was told to stay away from them by all the nutritionists and why I am not to use them. I eat little or no nitrates and stick with my own garden food and [I] must have lean meat everyday. - Sandra Redlands

     

    I have to take enzymes because I lost the head of my pancreas. - Sandy Miller

     

    Question 2:  How do you stay hydrated?

     

    Chug water on a schedule whether you're thirsty or not. Finish ‘X’ amount in ‘X’ amount of time. I have been a water drinker for a long time and had cut sodas out a long time prior to my surgery/diagnosis, but I do find keeping a large water bottle with me at all times reminds me to drink more. - Emily Wilson

     

    Drink lots of water and avoid diuretics. Now drinking lots of homemade lemonade to aid in hydration and kidney stone prevention. - Kelly Livingston

     

    I try to drink as much water during the day as I possibly can. If I can tell I am dehydrated, or getting dehydrated, I make sure to drink extra water and gatorade or powerade. During the summer, I make sure to drink gatorade when possible. - Anonymous

     

    I naturally drink a lot and did before surgery. Now 3+ litres of water a day. Hopefully receiving electrolytes to help with dehydration. - Ruth

     

    Metamucil and drink plenty of fluids daily. - Ed Minor

     

    Its hard…I do not drink enough most of the time. It seems like the more you eat and drink, the more you go. So personally, I’m still having issues in this area. - Anonymous

     

    Lots of water and green tea. - Lara Breunig

     

    Just try to remain mindful. I drink lots of water with my loperamide pills, 4 times a day, as one easy way to remember. - Anonymous

     

    Water and Pedialyte. - Jenny Jones Bay

     

    2 - 2 1/2 litres of water with a little tiny bit of cordial…sometimes 3 litres. - Elaine Duxbury

     

    Good question and one I have yet to find an answer to! I always try to have a disposable water bottle in my bag and car, as it encourages me to to hydrate. I'm trying to keep a 1.5L bottle of electrolyte water with me when at home so I have a visible goal. Soup and tea are great hydrators in disguise. Tic Tacs help when I'm in a pinch without water. - Dakota

     

    When my husband is dehydrated, I make him a homeade electrolyte drink which includes 4 C. water, 1/4 C. orange, lemon or lime juice, 1/8 tsp. sea salt and 2 tsp honey. It's a good subsitute for the bottled drinks but without all the chemicals. - Shawnie Bray

     

    I drink water and tea. [I] stay away from caffeine [and] all carbonation. I have sugar, real, no chemical anything and real cream in the tea and I sometimes enjoy a mug of hot chocolate with plenty of cream. I have a bottle of water in the car and take some wherever I go. It is critical to staying alive for me. - Sandra Redlands

     

    Drink water ever time you can. Take some with you. Avoid pop, it has sugar and drys you out more. - Sandy Miller

    Patient Wisdom

    Question 28: Have you had success with any dietary supplements?

     

    Factoid: Ever wonder why you are be prone to anemia or dehydration? Learn how our digestion system works so you can make informed decisions about supplements that might be right for you. (Be sure to scroll down to the animation). 

    Click HERE to return to Patient Wisdom Survey Questions