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'IC and weight loss programs' survey

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  • 'IC and weight loss programs' survey

    I was kind of disappointed by the ICN survey about different weight loss programs.

    As a severe IC patient, it is hard enough getting taken seriously in the medical community about just how completely disabling the disease can be, and how bed-bound it can make some who have the disease. If we're well enough to be debating whether to do Zone/Atkins/Weight Watchers, how serious a disease can it be?

    I would have preferred either
    - that this discussion and link were within the 'people in remission' thread,
    - or that it at least was premised by,
    'Some are completely debilitated by the disease. For those with mild IC or
    who are in remission, a survey not meant to seem frivolous but to weigh
    IC diet against weight loss' ...
    or some such thing.

    Am I overreacting? Did anyone else feel that ICN Facebook survey came across as too frivolous for a disease making them desperate?
    Severe IC developed fairly quickly, autumn 2010.
    So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

    - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
    - Methadone 9 ml/day
    - Instillations:
    - 40ml Kenalog (steroid for inflammation) 2 x per
    week, along with rescue cocktail of heparin,
    lidocaine, sodium bicarbonate
    - 20ml Uracyst, monthly @ $100/per
    - Depo lupron injections for endometriosis, monthly @ $88/per

  • #2
    I don't see a problem with the survey. The vast majority of IC patients find treatment options that work well and for those of us who are overweight, the results of the survey could be a huge help.

    Stay safe

    Elmiron Eye Disease Information Center -
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    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help:


    Diet list:

    AUA Guidelines:

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool


    • #3
      I didn't see the survey for what ever reason my face book is not working right and I need a teenager to figure it out for me.

      But my IC was severe for years, finally I found a good gp and uro who together gave me my life back.

      I like alot of peopel with IC had put on weight with the combo of age, beening house bound, being glued to my bed or on a good day the couch, all the weight gaining meds they get you to try, and eatting out of boredom or tring to distract myself from the pain.

      Yes my symptoms are much better controlled now so I finally decided to do a diet, I really don't think I could have handled it when things were bad, but last Sept I did the HCG diet, i lost all the weight I had to loose and then some.

      So yes I feel it is important to have the survey, but I do understand your thought about it minimize our conditions, although I am quite sure that is not what it was ment to do.

      My are with you all. May you all find a way to peace and joy in your lives.


      • #4
        weight watchers

        Has anyone tried the weight watchers points program?


        • #5
          The Weight Watchers program is one of the most respected and helpful programs out there. Year after year the American Dietetic Association rates diets and they consistently come out on top. :-) What's nice is that you don't need special food to be successful on the WW plan. You just log the foods you do and can eat. :-)
          Julie Beyer, MA, RDN
          IC Dietitian, Patient Advocate, Speaker, & Author

          Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

          Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

          You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

          ........ ........

          Other IC Diet Resources:

          IC Diet Webinar
          IC Diet Website
          For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
          Free IC Diet Booklet: What Can I Eat?
          Confident Choices IC Diet Blog
          IC Diet Newsletter

          *Let's Connect!*


          • #6
            I can see where your concern comes from but with that said I gained about 30 lbs from when I developed IC in 2007 and now. It came from a mixture of being on Lyrica which causes a lot of weight gain, going from being an active swimmer and athlete to a coach potato because of pain and as someone else said from eating to distract from pain. Now that my medication and very strict diet allow me to live a lower pain life I need to think about losing the extra weight which in itself can cause health issues. I have lost 13 lbs in just over a month from going on the "17 Day Diet" which with a very few modifications works really well for someone on the IC diet.


            • #7
              Honestly, I'm glad to see the survey, because my becoming overweight has been a very unpleasant aspect of how bad my IC is. When I was well, walking 4 miles a day, doing any kind of exercise I felt like, and able to eat healthy things like fruits, soy, etc, my weight was never an issue. But, now that IC has limited my diet, limited my exercise, and I'm on a medicine for IC that causes weight gain & slower metabolism, I'm really struggling with my weight and am 25-30 pounds overweight. My doctors have just shrugged and consider it part of being sick. I'm really wanting to deal with it though, because I'm not just a giant bladder, and it's not good for the rest of me (especially with family history of heart disease, strokes, diabetes) to be so limited.

              Weight Watchers is really helping me and the suggestions here about how to exercise with IC are helpful also.

              I think that dealing with a secondary serious health concern like weight management doesn't take away from the seriousness of our IC, it actually reinforces the life-damaging aspects of the disease.

              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
              Source - Pinterest

              Current treatments:
              -IC diet
              -Elavil 50mg at night
              -Continuous use birth control pills (4-5 periods/year)
              -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
              -Pyridium if needed,
              -Pain medicine at bedtime daily, as needed during the day several times per week
              -Antibiotic when doing an instillation to prevent UTI
              -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
              -Dye Free Benadryl 50 mg at bedtime
              -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
              -Managing stress= VERY important!
              -Fur therapy: Hugging the cat!