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  • Denial...

    So here I am again....with a week of symptoms and still no answers... I hate that I have to be my own doctor and that no one can tell me whats going on!!! I just had three weeks of being normal, and now I feel the same as before For so long I have been in denial about actually having IC. I try and wish it away.. like everyone Im sure...I just want to know that it IS posible to live normally... that this wont rule my life forever if I can just get a handle on it...Elmiron seems to be helping. I have been on it for 1.5 months and I am pretty sure that the last three weeks of goodness were because of Elmiron and diet as well. I clearly was doing something right! Right now I am peeing every 20 min and am comepletley miserable.

    I looked up ordering cystoprotek today ...apperantly you have to order it from Algonot online to get it shipped international (I live in Canada)... I think I will give this and elmiron a try and see how they both work. I just started back on the anti candida diet tonight as well, and have a diary about how I feel.. Im hoping that this also helps, as it did in the beginning before I started only the IC diet. I hate feeling sorry for myself... but some days I just feel so low, especially after a period of time when I have felt good. Anyone else still in denial... Guess im just starting to realize that I might only have myself when looking for answers about my bladder... and it feels really lonely...
    28 yrs old,

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



    Me in my graduation gown!


  • #2
    Oh, my goodness, Jinny Jean ~ Denial has so been a part of my thought process these last 2 years. I know from my doctor's compassion in his face when he reminds me of the relentlessness of this crazy disease that it's real, but oh how that denial creeps into the picture so often. How can I, a normally healthy person with no frequent visits to the doctor other than for an occasional sinus problem be dealing with this horrible menace???? I've always considered myself "healthy" so what's with this thing at this time of my life (I'm 61). It's so bazaar to have such an unpredictable illness. When I begin to feel a little better, oh how easy it is to convince myself that I can't possible be like all the others here on the site. So, yes, I too, battle with the denial, knowing it would be so much easier to just accept the fact that I DO have IC....something so difficult to believe.

    You ended your post with the "loneliness" that you're feeling. You're definitely at the right place to receive understanding, sharing, caring, advice and such compassion from the many affected by IC. This is such a wonderful site to come to whether you're physically or emotionally broken. There is usually always someone who has walked or is walking in your shoes.

    May you find the right treatment to lead you back to a somewhat normal life....I do have hope it can be done. I've worked at it for almost 2 years, have had times of feeling so much better and that's the time that denial hits.

    Blessings and remember there are many of us here who share your frustrations.
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

    Comment


    • #3
      I hope this flare passes quickly. Sometimes IC can flare for what seems like no reason at all. It's good that the elmiron is helping.

      Warm 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.

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      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


      • #4
        Thank you guys for replying and your support It made me cry this morning!.. in a good way I suppose. Like everyone else, trying is trial and error..and right at this point I am desperate to try anything to feel better. Get this.... Yesterday I went to a health food store, and had just asked hey, do you have anything that might help bladder irritation. WELL I guess that was my first mistake, because BY NOW I know what they have in health food stores, and it is all the same... It is all the same section that they go to... the "Uvi Ursi" and D Mannose section..... the Bladder infection section... in which we DO not have... hahah.Anyways this particular lady was like yes I have something for you! (of course you do)....."ill give you some salts"... I was unsure, but since I had never heard of this before and she claimed it helped HER with bladder irritation, I figured I had nothing to lose...(except my mind right?) lol. I admit that my desperation took over, and before I realized it (and before I read the LABLE) I had taken about 16 tablets of POTASSIUM CHLORIDE. Good lord. You can guess how much I suffered last night..

        I know that this is probably a set back.. started up again last week... as I was eating everything and anything when I was feeling good the last three weeks... I suppose it may have caught up to me? haha..... thats not funny though.... It "came back" last Friday an hour after I was really stressed about finding a job, and wham. Bladder was upset too.... Crazy how stress affects us...I am so grateful for this site and the compassion and understanding that can be found here. Even though I do feel alone, I know that it is true I can come here for help and support... I have for the mot part I think figured out what works for me... eating the diet and elmiron...but yeah I guess sometimes it can flare for no reason too... Hopfully I will be able to over come this denial thing... that would be ideal....

        I have started to drink these smoothie things... which may seem weired.... haha this mornings constists of: Mashed potatoes, carrots, coconut milk, celery, spinach, and a pear mmmmm
        28 yrs old,

        I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

        What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

        Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



        Me in my graduation gown!

        Comment


        • #5
          I wish I can wave a magic wand and make ic go away for everyone. I am not in denial I seen my bladder pics and it looks really bad.
          <center>
          <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
          </center>

          Comment


          • #6
            Hi, again, Jinny Jean ~ Yes, feeling better and going off the deep end of enjoying all the foods we can't eat I do believe will catch up with us and give us a good kick. It sure sounds like you know how to keep things at bay but I totally understand the denial.

            Take care.....You're never alone.
            Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

            11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
            8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
            8/2010 Surg gallbladder
            TREATMENTS (updated 4/15)
            IC Diet since 8/2009 (Able to vary 4/15)
            Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
            Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
            Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
            *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
            Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
            PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

            Comment


            • #7
              Yes I do think that it caught up with me...I have started the anti candida diet again, this time im gonna stick to it for a long time hopefully..... I have been feeling a tad better than when I first posted...I find that eating pears every few hours helps calm things down. Yesterday was an improvment and I was able to work in the garden all day.
              28 yrs old,

              I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

              What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

              Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



              Me in my graduation gown!

              Comment


              • #8
                That's wonderful to work in the garden. I'm planning on helping my hubby next week. I've really slacked off and he could sure use the help...any those home grown veggies are so welcomed.

                I can eat pears and I try to have them in the house, I should try eating them more often. Do you eat fresh or canned or ??

                Have another great day!
                Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

                11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
                8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
                8/2010 Surg gallbladder
                TREATMENTS (updated 4/15)
                IC Diet since 8/2009 (Able to vary 4/15)
                Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
                Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
                Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
                *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
                Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
                PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

                Comment


                • #9
                  I eat fresh ones Oh yeah, another thing that helps calm things down I discovered is coconut milk with a pear and spinach blended together. I add carrots, and whatever other green leafy veggie I can find too Sometimes flax powder (for constipation). Not only is all of this anti candida, but its alkanalizing too This seems to really help. Just had one this morning and I feel good! Almond milk (without sugar) I find to be really soothing as well... If anything this whole scenario has taught me to take care of my body!
                  28 yrs old,

                  I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

                  What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

                  Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



                  Me in my graduation gown!

                  Comment


                  • #10
                    I also went through denial when I first got diagnosed. It never sank in that IC is a chronic disease. It took me at least a year to realize that it requires major life changes like diet, exercise modification, not drinking pop. It takes time but you will get there. Hope you start to feel better.
                    Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                    Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                    Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

                    Comment


                    • #11
                      Thanks I have found a few things that work.... and I just had a really good month actually... until it flared up again. Gonna stick with the anti candida diet, as I am pretty sure it all has something to do with yeast in my case. ....Just wanna feel normal.
                      28 yrs old,

                      I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

                      What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

                      Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



                      Me in my graduation gown!

                      Comment


                      • #12
                        Hey - just wanted to say I happened to open this thread and saw your recipe for a smoothie. Thanks for sharing that. I heard coconut milk was supposed to be "healing" so I bought some but did not like it plain and thought I should find a recipe for some things I can mix it with. And I understand being in denial, but I also must say I seem happier after I fully accepted it and stopped fighting it.
                        Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

                        24 yo F

                        I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.

                        Comment


                        • #13
                          Your welcome lol My parents look at me like I am nuts when I make my smoothies in the morning... haha sometimes they are full of all weired veggies and such. This morning I made one out of salad greens,so spinache, romane etc, cooked carrots, a pear 2 tbs of flax powder, 3 stocks of celery and coconut milk. Tommorow my smoothie will consist of: ACTUAL coconut meat and milk from a coconut I cracked open today, 2 acorn squash cooked, handful of carrots cooked, salad greens, flax powder and 3 stocks of celery. I just fond it to be a really good way of getting lots of veggies! I was also following a lady on U tub.e Her screen name is go4dicipline (sp).. anyways she has IC and has manged to "heal" herself with going raw, and drinking raw fruit and veggie smoothies for breakfast, lunch and dinner. I found her to be very calming. She gave me hope. I ussually make my smoothies and have them for breakfast and lunch, but eat a full meal at dinner (following the anti candida diet).
                          28 yrs old,

                          I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

                          What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

                          Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



                          Me in my graduation gown!

                          Comment


                          • #14
                            jinny i was and have been in denial for awhile now...i so can relate to your post.please pm me and we should exchange numbers or facebook.
                            Newly IC diagnosed as of February 2011.

                            Medications I'm on that seem to work:
                            Zoloft- one once a day
                            Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                            Failed Meds:
                            Elmiron-after 4 months,digestive side effects got to be too much
                            tramadol-allergic
                            DMSO treatments(5-6)
                            probiotics

                            THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                            AROMATHERAPY-candles,incense
                            Village Naturals Aches and Pains Peppermint Bath Salts
                            Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                            ACUPUNCTURE/HERBS
                            Significant pain relief so far.

                            MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                            ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                            Add me on facebook Angela Hasic

                            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                            Lord, make me an instrument of your peace;
                            where there is hatred, let me sow love;
                            when there is injury, pardon;
                            where there is doubt, faith;
                            where there is despair, hope;
                            where there is darkness, light;
                            and where there is sadness, joy.
                            Grant that I may not so much seek
                            to be consoled as to console;
                            to be understood, as to understand,
                            to be loved as to love;
                            for it is in giving that we receive,
                            it is in pardoning that we are pardoned,
                            and it is in dying [to ourselves] that we are born to eternal life.

                            Comment


                            • #15
                              Hey! Thank you sooo much for your post! I had done the anti candida diet and also limited oxolates and tweaked the ic diet down to a very small amount of foods that didn't cause me bad symptoms. After a couple of weeks of that and taking a fourth of an oxybutinin every few hours as needed I was doing so good. It hadn't gone away completely but I was not miserable for the first time in months. So I started adding more and more back into my diet thinking I could just take the oxybutinin in a minimal dose (hardly any side effects this way) and be fine. I was so happy because I socially, emotionally and physically started to get my life back (as it was before ic). Then slowly but surely I guess the inflamation ect. was building back up. I did not realize it - I think b/c the medication masked it. All of a sudden I am exactly where you were at when you initially made this post. The past few days I've been so disappointed and so on edge b/c the symptoms are so miserable. Reading this helped me accept that I too have to go back to the life style change if I want to get back to feeling better. It's disappointing to say the least. I hate not being able to eat or drink what I want to. Socially it effects me the most but also at the ripe old age of 34-food and beverages are the main ccrutches I have and enjoy (other than my family and friends). I only weight 118 but food and drinks really are such a joy in life to me. Unfortunately pears give me a really hard time. So does almond milk. I think my problem is my list of foods that sre safe is so short and so bland that I do okay for a short while then I do't stick with it. I hope you are feeling better now. Thank you again so much for posting. It's really help me put things back into perspective when I was feeling so lost and confused.
                              Diagnosed w/ IC 12/2010. 3 small kidney stones removed in May of 2011.

                              Currently taking: Elmiron (3 times a day-pour capsule into about 4 oz. of water and drink it down (with a little food on my stomach first), Valium (an eighth to a fourth of a pill as needed (rarely need this anymore), and Curelle Probiotics -one a day in the morning on an empty stomach.

                              Tried: Urelle, Prelief, Oxybutynin, Urogesic Blue, antihistamines, nuerotin, flomax, vesicare, enablex, cystoprotek, prozac, quercetin w/ bromelaine, marshmellow root tea, garlic pills, fish oil, magnesium, Vitamin D-3, Boron, B-12 w/ Folic Acid drops. Homeopathic allergy shots for food and inhalents.


                              **Elmiron and Culturelle Probiotic have helped me get a better quality of life. I've been on the Elmiron for 6 months so far and am feeling so much better and can eat and drink so much more!

                              **I love the ICN - it has been a blessing in the midst of this evil curse!!!

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