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  • Newly diagnosed and terrified

    Hi guys,
    I was diagnosed last Wednesday by my gyn after about 3 long years of attributing pain to my fibroids. (I had dozens.) I have gone through so many emotions in the past five days including sheer terror, deep depression and fury. Just before being diagnosed, I been seeing a urologist for two weeks who concluded- by way of a giggling 20-something year old- that it was all in my mind and there was nothing more that they could do. It took my gyn about 5 min to put the symptoms together and test me for it. (Which was pure agony for me as I felt like acid was in my bladder.) Anyway, I am a corporate flight attendant working for an outstanding company and I hope I can keep my job. My symptoms appear to be mild compared to some of the people here but the pain is constant. I am a little freaked out by the diet thing and am a major foodie so I have started by cutting out saccharine and aspartame which I use every day in coffee, tea and it comes in my softdrinks. I am thinking there is a little change but it is truly too early to tell. My energy level is usually extremely high and I am the happiest person but my gyn thinks that I may need to get on antidepressants as the past few weeks has really done me in as the pain has dropkicked me and I stayed in bed for about a week. Today is a good day for me though, some people did not have the privelige of waking up today, right? So, all in all, I am still in shock about this but I hope to join hands with you guys and make the best out of the hand we have been dealt.
    Sky Girl

  • #2
    Hello!
    I hate to hear that you have IC but not all is lost. I'm a foodie like you too and though I got my diagnosis pretty recently too, the diet's made a pretty big impact already. If your diagnosis is mild it might not take as long to find a good baseline and be able to start experimenting with things. I've been brave enough (though it's probably not smart) to even try beer - lo and behold, it doesn't bother me! (Vodka, though, not so good...) I've been able to try a couple of fruit juices that aren't so bad and kefir hasn't upset me so I'm holding out hope for yogurt in a few weeks. I am, however, soooo sick of eating meat it's ridiculous and I stocked up on frozen fish fillets (in this case orange roughie) and started researching some vegan diets for some alternatives to soy (noooooo!!!!!).
    You might try weening yourself down off of the coffee and sodas. I hate not being able to drink coffee (I KNOW that affects me), and though it's "cheating" I've only ever been able so far to work myself down to green tea in the morning. Next step, white tea, and then maybe I'll get off the caffeine completely. I've been finding that dark brown beverages, aside from a good natural root beer, are a tad upsetting.
    One way of looking at it is if you start now, you're that much closer to being able to add things back in down the road, and maybe you'll be one of the lucky ones who, once you've started healing, won't have too much to worry about from food triggers. That's what I'm hoping for, and so far, so good.

    Comment


    • #3
      Hello and

      I think the IC diet is very important.. Think someone replied on here when you drink carbonated drinks thats like pouring acid on a sore, and you know what that would do..
      You should read the IC handbook there are all kinds of things in there that can help you...
      I hope this helps...
      We are all here if you need anything..
      Hugs
      Ronda

      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:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      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.

      Comment


      • #4
        mellusk is right -- you really should take the diet seriously for a few weeks to see if there is any improvement. Many mild ICers (and even some more severe ones!) say that this is THE most important step they took -- and some are able to control their symptoms through diet alone. Unlucky me -- I'm not one of them *sigh*

        Cutting out aspartame is a good start, since I know it really really bothers me, but in the beginning you really need to try to give up those sodas and coffees. I know, I know... it really stinks...but it's the only way to see if your diet is affecting your symptoms.

        There is a link to the IC Diet in our Patient Handbook (http://www.ic-network.com/handbook) and it has lists of foods that a lot of ICers should start by giving up.

        Have you started any treatment for the IC -- any medications, etc? The antidepressant thing may actually help your symptoms. A tricyclic antidepressant, Elavil, is often given in very low doses (lower than what would be used to alter mood) and helps many reduce pain and urination symptoms. Some ICers are on other types (including SSRIs like Prozac, Zoloft, Lexapro, etc) and say they help; others say they do nothing for bladder symptoms but do help mood. This is something you should discuss with your doctor.

        Remember, there are lots of treatments to try (listed in our handbook), so don't give up until you find what works

        And to the ICN
        ****
        Jen

        *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.

        Comment


        • #5
          Since you've already gotten some great advice, just let me add my
          Hugs,
          Tracey
          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:
          http://www.ic-network.com/diet/2009icdietlist.pdf



          Dx's:
          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
          Others:
          Wellbutrin 150mg 2x's a day for Anxiety/IBS
          Pepcid 40mg a day for GERD
          Zytrec for Nasal Allergies
          Align Probiotic daily for IBS

          Comment


          • #6
            "Never Give Up."

            To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

            My Photobucket Link:
            http://s237.photobucket.com/albums/f...ramack_photos/

            Comment


            • #7


              And, the others are right about the diet. I found caffeine to be my biggest trigger...I can't even drink a sip of it now without a major flare. I can eat a few pieces of chocolate, but that's it! I find that even decaf coffee and decaffeinated sodas can bloat me and cause some discomfort. But, everyone is different and after a few weeks you should be able to identify the foods that you really need to steer clear of.

              Good luck and we are always here for advice and support!

              Claudia

              ~Claudia

              "A heart is not judged by how much you love; but by how much you are loved by others."
              ~ The Wizard of Oz

              "If I ever go looking for my heart's desire again, I won't look any further than my own
              back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


              Comment


              • #8
                Here is another one!!

                Miss Bessie

                Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

                Comment


                • #9
                  Hey welcome aboard sky girl!!
                  I must say I really admire your attitude in all of this. To be diagnosed with this horrific disease is a hard pill to swallow, but with an attitude like yours you'll do just fine. Sometimes when the doc orders an antidepressant it isn't for depression. Tri cyclic antidepressants have shown to be very effective in helping with chronic pain. So don't fear, ask the doc why. I hope you find a nice balance with your diet and do give it time. Sounds like you have a good doc to have recognized it so quickly!! Some times that can be half the battle, finding a doc that knows anything about IC. I hope things go well for you and you find what works for you without too much disturbance in your life.
                  Kim

                  Comment


                  • #10
                    I'd like to add another to the IC Network.

                    I also encourage you to try the IC diet and see if it helps. That means you would need to sacrifice your coffee, tea, and sodas (at least for a while), but it will be well worth it if it works. You might try some of the herbal teas --- and drinking bottled spring water is a good substitute for the sodas.

                    And please let us know how you are doing.

                    Warm encouraging hugs,
                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    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: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    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.
                    [3MG]

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

                    Comment


                    • #11
                      Im like you in that my IC case is mild. I went thru the elimination diet (which was sooo hard!) and found the few things that really bother me. I can count my bad stuff on two hands. So dont freak out yet...My biggest triggers are cheesy crackers and vitamins. I gave up caffeine on the day I was diagnosed. I work nights so this was hard. I just took my weekend off and delt with the headaches. Only took a few days. Its been almost a year, and Im glad I gave it up. It was something I was wanting to do anyway. I hated feeling like I was addicted to something.

                      Im glad you found us! This place has become a second home for me. The people are so nice and helpful. Feel free to holler anytime!
                      Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

                      I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

                      Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

                      I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

                      Comment


                      • #12
                        Thank you for your replies!!

                        I was gone for seven days, left the day right after my tests. It took about three to four days for the pain from the tests to subside. Now I am back to the dull burning aching pain that I have become accustomed to for the past three years. Anyway, saw my husband last night (he travels alot as well.) and celebrated with a glass of my favorite beverage, Pinot Grigio Frizzante. Well, apparently that is one of my triggers. On a scale of 1-10, I will give it a 6.
                        I bought a 'survival guide' to IC and opened it last night. I had to put it down because it is so overwhelming and I feel an ostrich mood coming on where I might be better off not knowing at least for now.
                        My husband is taking this worse than me if that is possible. He has been so worried about my health for some time and I feel bad to burden him. We have a farm and this past summer I ended up in the hospital with heat exhaustion. It was over 100 degrees outside and my temp was 91. One thing that may have contributed to my condition is that I do not sweat. I am physically unable to sweat in the way our bodies are meant to. I may get a little 'condensation' on my forehead or a trickle down my cleavage but other than that -nothing. I have never worn antiperspirant and have always been unable to cool myself down properly. I get bright red and my skin is completely dry when I get overheated. To top that, I was diagnosed with Discoid Lupus last year after working in our pumpkin patches and ended up getting blisters on my arms so now I have to stay out of the sun completely. So it seems like there is some autoimmune response thing going on with the inability to sweat and the lupus. Oh, and does anyone have fibroids? I had to have a hysterectomy and the doctor was horrified to find grapelike clusters on the outside of my uterus to the extent it did not even resemble a human organ. I had between 12-20 on the inside (after two UAE procedures) and the ones on the outside did not even show up on the MRI. Sorry to type a novel but I am just trying to connect the dots and hope that maybe someone who reads this is having the same reactions. Thank you again for listening. It helps me immensely to find others who know what I am going through.

                        Comment


                        • #13
                          Sky Girl, I and probably everyone else here knows exactly what that feeling of "being overwhelmed" is like. I'm starting to adjust to it, but at first it more than anything made me feel angry and like a pouty toddler almost - I didn't want to know anymore, I didn't want to hear anymore about what I couldn't have or do, and I wanted to just crawl in a hole until it went away.

                          Before I was diagnosed with this, I knew I had asthma, a fibroid adenoma in my right boob, and my only two allergies were latex and bell peppers, though all the women on both sides of my family have histories of reproductive problems. There are a lot of women on here with a whole laundry list of serious health problems similar to what you've experienced. The autoimmune reaction is definitely a possibility, but in my case, I've been starting to suspect some nerve damage in and around my urinary tract.

                          One thing that might be helpful for you though, is hey, at least you don't have to sit down at work all day! One of my coworkers helped me put cinder blocks under my desk so I could stand and do my job if I need. It has helped A LOT today. Also, most of the beer I have tried hasn't bothered me with the exception of one (smoked porter) but Greygoose vodka did.
                          You and I will both get the hang of things over time.

                          Comment


                          • #14
                            I have been backsliding, but...

                            Ok. Here is my latest scoop. I am in so many different time zones and up at all hours of all days and nights and I really really like/need my coffee. So I compromised and gave up sweet-n-low and have been using natural sugar. (The beige colored chunky kind and the darker raw sugar.) Well!!! I am virtually pain free!!!!! I have used sweet-n-low every single day for over 20 years and only drink diet drinks. I have water now or a regular Coke or Pepsi instead of diet Dr. Pepper or root beer and I have not woken up in pain since last week. I do not have the horrible aching that I have had for years now-only a little ache every now and then but that is probably diet- and while this may be a temporary reprieve, I am happy for right now.

                            Now. For the other news. I worked for an airline in the late 1980's on unpressurized airplanes. There was an airconditioning system that retained water and filtered all of the dirt, germs, viruses, sludge, filth and goop from the plane and the passengers. This water would be dumped into the cabin on takeoff or sprayed in the air when the system was turned on. Out of the 20 or so flight attendants that constantly flew on that equipment, about 6 are permanently disabled- three are 100% disabled. And now I am having all kinds of problems so I guess I am one of those affected. While there will never be any way to prove anything, everyone's symptoms started around the same time. I started getting 'ringworm like' lesions which has turned out to be lupus and sores in my nose. Two others were on oxygen as a result of some neurological disorder and one has been diagnosed with gastroparesis and is bedridden. There are three that I have lost contact with but they also had problems that kept them out of work. I am wondering if there is a mold or something like that that has contributed to these conditions. Do not know if it has anything to do with IC but no one in my family has EVER been sick and for some reason I have so many things wrong that started after I was flying on those planes.
                            Has anyone made a connection to mold?
                            Thank you for listening!!

                            Comment


                            • #15
                              Sky Girl,

                              Funny you would ask that question.. I had come in contact with alot of mold, after hurricane Katrina.. My house was infested with it and I rumaged through it looking for anything salvagable..About 7 months after that I was dg with IC.. I had no symptoms before with IC, except using the bathroom more than most, but I aslo drank aot of fluids..
                              Hugs
                              Ronda

                              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:
                              http://www.ic-network.com/handbook/

                              Diet Reference Sheet:
                              http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                              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.

                              Comment

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