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Newley Diagnosed and Scared

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  • Newley Diagnosed and Scared

    Hello. I was just diagnosed a few days ago and I am scared to say the least. I am so glad that this is a forum that I can come to for help and support. I am scared but at least I have a diagnosis and I can work with that. I have stated on the Elmiron today and have been working hard on modifying my diet. This is going to be the hardest for me. NO CAFFINE that is going to kill me literally. I do not know how to function without my moring cup of Java. And what the heck is acid free coffee?? Can I get this at the grocery store???
    I find myself afraid to eat! This diagnosis came just several months after I had back surgery. I had not even recovered from that and then this happens. I have a very supportive husband and family and I know that I can get this under control and get on with my life as normal as possible. Sorry if this is a little long.

    Looking forward to talking with other IC individuals


  • #2
    Hey! Sorry to hear you have to join us with the IC bit, but it'll get better. The diet can be really hard at first, but its definetly worth it,I found that after cutting a lot of the things that I thought weren't really bothering me from my diet I actually felt so much better. There's just so many things that can trigger flares. The caffine bit is hard. I haven't had a soda for over a year now, but every once in a while I will slip in a glass of tea or coffee (in moderation of course, and I figure that at least this way I'm not having the caffine and the carbonation). The main key to the diet is moderation definetly. Once you figure out your main triggers you can start to ease some of the "bad" foods back in but take it slow.
    I've been on Elmiron and Elavil for about 6mos now and am in what I feel is remission. There are actually days where I almost forget I have IC. I'll go weeks without flares or pain now-its so wonderful, it was pretty bad last year at this time. I've been able to add a few things back in-a chocolate here or there, coffee, tea, all in moderation of course. Tried spaghetti though last week, even with just a little sauce it's still a NO-NO for me-OUCH!
    Glad to hear you have a good support system. That's very important. Dealing with IC can be so frustrating. And of course now you have all of us too, and we all know exactly what you're going through.
    Hope this helps a little.


    • #3
      Welcome to ICN, Saracity!

      I think being scared following an IC diagnosis is pretty common. Scared, depressed, angry, relieved, etc! But, now that you know what it is, you can get proactive in dealing with it.

      Yes, you can get low acid coffee in the supermarket. No doubt it's best to give it up all together, but I'll admit to not being that strong of will. -I had a serious coffee habit! So I bought a jar of Kava (instant, acid reduced) at my local store. Be aware that Kava still has the caffine, which is also a potential trigger for flares.

      Like Leah, my symptoms have improved so much from when I was diagnosed. I actually do forget I have IC now. I was very strict about following the IC diet at first, and saw positive effects within two weeks. When I began to add foods back in, I found I don't have as many triggers as I'd feared. And then, even many of those triggers like tomato sauce, I now occasionally indulge in and come out flare-free with Prelief or Tums. So hang in there. The diet can seem depressing at first, yet may not turn out to be as restrictive as you think!

      "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


      • #4
        The beginning is always the're in pain and the things that you read about IC are scary. But remember, most folks with IC find the meds that work for them and come to a point where they feel good and go about their lives. It just takes time to figure out what works for you.


        • #5

          I am sorry you are going though a hard time right now, The first couple of months were my worse..One of the biggest things that has helped me was staying away from problem foods..Have you checked the IC diet out yet? Also the handbook has some grat tips in it...Take care and if you need anything just let me know..

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

          Link to Patient Handbook:

          Diet Reference Sheet:

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

          ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


          • #6
            The others are so right... the beginning is the hardest time. Once you do try the diet and work with your doc to find the medications and treatments that help you, things will get much better.

            Definitely do try the diet for a while -- it may help you a lot. Some are extremely diet sensitive, and others not so much. However, it's worth that try because you may very well find out what your biggest triggers are and be able to reduce symptoms right away on your own!


            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. 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.


            • #7

              Just remember there are a lot of people here and I am sure anything you feel or concerned about there are some that have walked in your shoes.
              TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
              My Helpful Hints for Home Instillation:

              Institute of Female Pelvic Medicine (J. Dell, My MD)
              Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
              I post to encourage and offer total support for rescue instillations.
              Find me on facebook: L. Clark Thomas


              • #8
                The ICN Shop has low acid coffee. If you have a Trader Joe's in your area, they also carry low acid coffee beans. I can have a cup in the morning with no problem. I have a grinder and do like to grind my own.

                I also have a toddy maker, which further reduces the acid and also removes most of the oils from coffee.

                Stay safe

                Elmiron Eye Disease Information Center -
                Elmiron Eye Disease Fact Sheet (Downloadable) -

                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


                • #9
                  I just wanted to add my as well!!! I too did well with the lower-acid coffees and I also grind my own - just seems to taste better!

                  Once again, welcome to the gang!

                  How do you eat an elephant? One bite at a time...

                  Harry arrived 2/23/09!

                  *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                  IC Diet Cheat Sheet:

                  IC dx'd Nov 2004
                  Lymphocytic Colitis dx'd July 2005
                  Possible IBS
                  Current IC Meds
                  Vistaril 25mg in the evening
                  Previous IC Meds taken:
                  Cystoprotek - 2 caps 2x's a day
                  Elmiron, 100mg 3x's a day
                  Ditropan, 5 mg 3x's a day
                  Wellbutrin 150mg 2x's a day for Anxiety/IBS
                  Pepcid 40mg a day for GERD
                  Zytrec for Nasal Allergies
                  Align Probiotic daily for IBS


                  • #10
                    Thanks Everyone

                    I just wanted to say thank you to everyone that replied to my post. I am definately doing the diet and have started a food log to keep tract to determine what my trigger foods are. I did make a mistake yesterday morning and had a cup of Decaf coffee when I went into the office. I did not realize that it had to be Low acid as well as decaf. I had a flare up that night and the following morning. I am finding the diet dificult. Ihave lost 15lbs since my back surgery and keep losing weight. My husband says that i am getting too thin. I just do not know what to do. I am scared to eat..... I am currently on the Elmiron, take Elavil at night and also take Atarax in the morning. I think I will also check out that pruduct Prelief.