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  • #16
    I feel the same way. I wake up in the morning doubled over in pain, take my pain med, somehow get through the day, then it starts at night again. It's so frustrating, no matter what I do, nothing helps. I've tried everything and I'm really losing hope here. I went to a GYN last week to see if he could help, I was told when I called the office that he does know about IC and has other patients with it, so I was hopefull. When I was waiting in the examing room, I see a clipboard all about IC on it, so I'm thinking, yea finally someone who may really know about IC. When he comes in and starts talking to me, he says, so what seems to aggravate your symptoms, and when I started to mention certain foods, he says "FOOD irritates you? My mouth just dropped and I realized once again, he has NO idea about IC..It's so frustrating. I'm tired of going from doctor to doctor for this and none of them seem to know much about it. Gave up on the URO's because they don't want to treat you with pain meds and that's the only thing that keeps me from going out of my mind from the pain. I don't know, I just give up....

    Kari
    Kari

    I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

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    • #17
      You know, the less I eat the better I feel. I'm getting to the point where I don't want to eat. Brittany tried to convince me that it is a bad idea.. but at 230 pounds, I have some weight to shed anyways! LOL! I didn't have anything to eat this morning or for lunch, and now it is 4pm and I'm sitting down with some oatmeal.

      Sigh... I'm so sorry to hear that you guys are struggling too. I haven't found anything other than Ultram to take me from a 10 on the urgency scale to a 6-7. Atarax is my miracle drug to sleep at night, but it doesn't help during the day
      [SIZE="1"][B]Be well, Alyssa :hi:[/B]

      [

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      • #18
        Kari, I'm so sorry you have so much trouble with pain and you have gone to yet another doctor that doesn't know anything about it. I am so fortunate that I have a doctor that knows a lot about IC (it is his passion). He doesn't prescribe pain meds other than Ultram, but he refers people to a pain specialist or has them work with thier primary doctors. My primary doctor would give me anything I need, but I don't want pain killers. Ultram is hard enough to for me to cave and take. My primary doesn't have many people with IC, but she understands how hard it is, how the triggers work, what meds are possible, etc.

        I really hope you find someone to help you! My doctor is a urogynecologist (pelvic floor disorders).
        [SIZE="1"][B]Be well, Alyssa :hi:[/B]

        [

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        • #19
          what is MS Contin?

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          • #20
            I know this post is over a month old, but there are a couple of things I wanted to mention. #1 is that oatmeal is a problem for some ICers. You might want to try rice or some other cereal for a few days. And #2 I can't tolerate fat free milk, but can do the low fat, like 1% or 2% with no problem. I have to wonder if it's the process used to remove the fat?

            Hugs,
            Donna
            Stay safe


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            • #21
              Interesting points Donna. I did switch my oatmeal to grits and I didn't notice a change (and I added the oatmeal back without a change). I dont' have oatmeal anymore (just grits for warm cereal), but I will try avoiding milk for a couple of days. That is one of my favorite things, but I will avoid it for a couple of days to see what may happen...

              Thank you!
              [SIZE="1"][B]Be well, Alyssa :hi:[/B]

              [

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              • #22
                Allergy testing

                Hi I am new on ICN and wanted to mention something that was brought to my attention a couple of days ago. I have to take allergy injections for our every day allergies (grass, trees, etc) and I was speaking to a friend that has IC and she had food allergy testing done and said she was really suprised at how much better her IC had been doing since she began avoiding the foods on the list. I thought what the heck I would mention it to my allergist. To my suprise she knew what IC was and that for many people with IC there is a connection. The layer that is supposed to be doing the protection would typically get irritated anyway by a food eaten that one is allergic to, but way worse on IC because of the layer being damaged the toxins seep right into the walls of the bladder which leads to worse flaring. Any hoo as long as she doesn't over do it she occasionally cheat without major flares as before. So I thought what the heck and am getting the food allergy test. I will let you guys know how it turns out.

                ALSO someone asked about milk. I don't know if it is coincedental but at night time now I drink a small cup of milk and it seems to prevent me from making frequent trips to the bathroom in middle of the night. The only bad thing is I read (can't remember where), but if you don't get enough
                V-C in your body when drinking extra milk, the calcium can causing burning when urinating. The V-C breaks down the extra calcium. Not sure, but for now the milk works for me.

                Just thought I would chime in!
                Brandalyn

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                • #23
                  what is MS Contin and where do you get it and what is it for?

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                  • #24
                    I relate to not being able to find triggers. Well, some of mine are clear and easy, but now I'm down to only eating food on the "usually ok" list and have stopped making progress, and will still have good days and bad days. I don't know if that means I've eliminated all my triggers and just need medicine, or if I have to start eliminating food on the usually ok list.
                    Doing well on: IC diet, prelief before every meal, recently discovered enablex made me worse

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                    • #25
                      Hi Brandalyn,

                      Welcome! And thanks for your post! I don't have any allergies that I know of, but the information about links between IC and allergies is really interesting to me because I'm someone who is helped by H-2 histamine blockers (although atarax doesn't help me--I think because it's an H-1 blocker). I haven't been able to find an allergist who knows anything about IC yet though! So, it's nice to know that there are some out there!

                      Thanks again for chiming in!
                      Best wishes, little bear

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                      • #26
                        MS Contin is a pain drug for long term use. It's morphine sulphate. I take a 30 mg dose and it used to make me tired but now I'm okay with it. You can have a doctor prescribe it for you.

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                        • #27
                          All of the foods mentioned in this thread are bad for me. I can only eat:

                          plain pancakes with butter
                          dark meat chicken cooked with only salt, no browning of the meat
                          mashed russet potatoes with only butter and salt
                          sliced steak cooked with only salt
                          white rice with butter
                          flour tortilla with american cheese (heated in microwave)
                          cheese fries
                          hot dog (do not try this one, I don't know why I can have this)
                          aquafina water

                          I wouldn't go anywhere near oatmeal, grits, or more than a Tbsp of 2% milk.

                          I don't know of anyone having trouble with white rice, chicken, or russet potatoes, so maybe try that stuff. But then, everyone is different

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