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A little confused?

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  • A little confused?

    I'm fifteen, which is why I am in the teen section, haha. I was just diagnosed a little over two weeks ago (March 3, 2011) and was put on Elmiron. So far, it isn't helping at all, but I know I have to give it time. My urologist is only letting me have it twice a day instead of three times like a 'normal' person would, because of my size. (Five foot tall, 92 pounds). Although I am angry because he won't give me a higher dosage which in my eyes could possibly give me more, (some) relief, I understand where he is coming from. I have read the diet for IC and ... wow... I mean, not to sound like a complainer but I am fifteen. I love pickles, I love sugary cereal, soda used to be my love haha. But, I know that changing my diet is a huge part of this, so I am starting to do that. I have cut out caffeine as it says to do, but I also see it says no soda, so what about caffeine free? Can anyone help me with that one? Thanks.(:

    Also, what treatments work the best with you guys? My brother also suffers from a chronic pin condition, (RSD) and he is on many pain meds. One of which is Elavil. My mother said that if the Elmiron does not help me, she is going to ask my urologist if I can be put on another pain med, but when i looked up some she was naming, i noticed they treat depression and such things. I'm almost kind of nervous about being put on a pill for that..

  • #2
    Elmiron does take some time, but it isn't considered a pain management med for IC. It is thought to work by helping the coating inside our bladders to rebuild itself. So, the elavil works a different way and the doses they give for pain relief are much lower than they would give for depression. Also other people only take elmiron twice a day but they still take the 300mg, and I think we have some grown women that are about your size! Might want to research that some and ask the Dr.

    Sorry but no soda is ok. Although some people do say they can drink rootbeer with lots of ice. Hopefully you like rootbeer, I don't so it doesn't do me any good! Be sure you drink plenty of good water, like spring water or good filtered water. It isn't easy with the diet, especially at your age. A lot of people can eat cherrios so you might try the honey kind for the sweetness. It won't be that bad once you get used to it and you might just end up the healthiest teenager around!

    Take care, and feel better soon,
    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


    • #3
      Hi, I'm on elmiron twice a day too, my doctor says his patients respond really well to the 100mg 2x/day dosing and so doesn't see the need to add the third dose a day. It took a couple of weeks but I started noticing that things that bother me a little stopped. I realize that was early/fast and it can months for it to help but just wanted to let you know it varies. I had to go off of it for about 5 days and could tell within 2 days I didn't have that little bit of coating protecting me anymore.

      For me, its not the caffeine so much as the carbonation itself that really bothers me. Even sparkling water offends my bladder! When I was in my 20's I lived on diet coke, I drank it for breakfast, snacks, lunch and dinner, I can't believe I did that!

      It doesn't make sense to give you the elavil only after elmiron fails. They are two totally different medicines. Elavil and other tri-cyclics at a super low dose like 10mg effects only your nerves and has nothing to do with depression. Its considered an off-label use but works really well for pain. My husband takes it for his osteo. Just to put it in perspective, depression doses start at around 75mg and go up from there so don't worry about it in that regard.

      Alot of people here start out with elmiron, elavil or similar and an antihistamine and that combination seems to help alot of people right from the start. There are others after that, depending on pain levels.

      You can still eat alot of sugary stuff, luckily sugar is not an issue. My doctor, urogynecologist, told me start with these at first and if I didn't get relief to cut more out after that: Tomatoes and tomato sauce, vinegar, ketchup, mustard, cranberries, spicy food, anything citrus including juice, caffeine, coffee/tea, though peppermint, chamomile and rooibus tea are fine, chocolate, carbonation, artificial sweeteners, vit c and vit b.

      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link:
      AUA 2011 Guidelines to diagnosing and treating IC overview-
      AUA 2011 Guidelines to diagnosing and treating IC PDF:
      Great treatment flowchart on page 19 of the pdf


      • #4
        Hello KD, glad you are posting, you will find lots of info here, check out all the threads, not just the teen site. At least you got your diagnosis and your doc did not dismiss you saying you are too young to have it (a common problem). Sounds like he and your mom are on top of things. Give the Elmiron time, at least 6 months, maybe more.

        Try carob as well, it comes in many forms from powder to candy bars. That would be your chocolate substitute. You can add carob powder to your pudding or cake mixes for a "chocolate" fix.

        Caffeine free root beer in moderation seems to be friendly for a lot of people, some are just sensitive all around to the carbonation. There are all natural root beers out there as well. Any soda in general is bad, you have to read labels, there are a lot of artificial ingredients and preservatives, you will learn quickly to be a label reader. Some people are sensitive to anything artificial, some are not. Would suggest you stick with the diet strictly for at least a month and then add one thing at a time from the maybe list, every few days. You will quickly learn what your sensitivities are.

        Most supermarkets offer all natural turkey breast and roast beef at the deli section. We have had success with that, also swiss, provolone and some mild cheddars. Just think is this processed or not. Lunch meats in general have tons of nitrites and nitrates, but some can tolerate. There are a gazillion different things to try, don't get discouraged with the diet, and as someone else said, you will be a very healthy 15 year old!

        If you can cook, all the better, and if you can't, you might want to start. Take all the home ec cooking courses you can to get your basics. There are so many options, it becomes overwhelming as to what to eat next! Just stay away from all the really bad stuff for your bladder.

        Lots of good recipes on this site from fellow ICers, you will find a lot of good suggestions. If it gets too overwhelming for you, and your mom has good insurance for you, you may want to talk with a dietician/nutritionist who is familiar with IC, they can sometimes point things out to you and explain it in laymen's terms. Think we paid one about $60 for an hour and half of sit down discussion, she had a lot of knowledge.

        Above all, don't get depressed over this. Yeah, you gotta give some stuff up, white pizza instead of tomato, no OJ in the morning. You have to weed your way through it, just go slowly and you may find you can tolerate more stuff than you think. Caffeine, it is tough to give up, but look at the "old" folks on here who have to give it up after 40, 50 years or more of having it every day. You are fortunate to let it go now, it would be really tough years later. Hope you like salads! Just no tomatoes on there and the creamy dressings are better than the spicey or tomato based. Just READ LABELS. You will have an education experience you will not have in high school.

        Wish you luck on your journey girl, you'll be okay. Stay strong and don't give in to peers, if they don't understand, just say you've developed allergies (kinda true) and will get sick if you eat that. Glad your mom is on your page, that is fantastic. She sounds like she is educating herself as well, and may be your best buddy as you get through this initial stage. Good for YOU! Take care honey, let us know how you are doing. You can PM us anytime as well, don't like to take up too much space here with some stuff that may be trivial to others, but important to you. Sure you will hear from others in this regard.

        Stick with your studies and do well in high school, this is not the end of the world. Hopefully you will be one of the lucky ones and Elmiron will do the trick. The school year is almost over, and then you can really focus on your own self. Take care! Jill, wife of Bob (by the way, my husband is the ICer, and he loved his junk food)
        Last edited by ICNDonna; 03-19-2011, 07:04 AM.


        • #5
          Hey so I know i've posted a lot now, but I just saw this post too. I'm also 5 feet and about 94 pounds, they did put me on 3, but maybe that's because I'm a little older? I'm not sure. I would wait at least 5-6 months to see if the elmiron starts working. I've been on it for a month now, but haven't really noticed anything. I guess we have to hang in there. You could ask about a prescription pain killer since elmiron just coats our bladders and isn't really a pain killer. I wasn't really big into soda, but I definitely love sugary things as well. (Chocolate is the hardest thing ever!) I found and greatly tweaked a sugar cookie recipe that turned out really good, my boyfriend said they were the best sugar cookies he's ever had and my friends all love them... here's the recipe

          3 cups all - purpose flour (make sure you check the ingredients and they don't add any additives - I've found that King Arthur Unbleached whole wheat flour is good because the only ingredient is the flour)

          1 1/2 tsp. baking powder

          1/2 tsp. salt

          1 cup dark brown sugar

          1 cup butter (softened)

          1 egg

          3 tbsp. of heavy whipping cream

          2 tsp. vanilla extract

          Small bowl of white sugar (for the end)

          Directions -
          Preheat oven to 400 degrees F.

          Sift together flour, baking powder, brown sugar and salt.

          Cut in butter and blend with a mixer until crumbly

          Stir in egg, vanilla and heavy cream. Blend with a fork and then your hands to ensure thorough blending.

          Form into balls and roll in white sugar

          Place on a greased baking sheet and then press down flat

          Bake for 6 -7 minutes or until edges are lightly browned.

          I'll let you know what other sweet recipes I find it you want!
          Emily Anne

          Had abdominal pain since I was 12 that started getting much more severe when I entered college. I just got diagnosed in February 2011.

          Elmiron (100mg) 3x/day

          Severe IC, Bladder which holds 300 mg rather than the normal 600 mg, Pelvic Floor Myalgia, Imperforate Hymen (surgery in 2008), Ovarian Cysts

          Heating pad/rice sock, laying down when in pain, rescue IC diet


          • #6

            If Elmiron doesnt work for you I would recommend VESICARE. Its a great medicine it helps my pain even though I just started it today.