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  • #1

    Newly diagnosed and frustrated

    Hi,

    My name is Kelly and I was just recently diagnosed with IC. I have had repeated " bladder infections" for as long as I can remember. I recently found a wonderful uro who finally diagnosed me. I feel blessed to be his patient now.

    Today is not such a good day. I had to leave early from work because my bladder was hurting so bad. I am in the middle of a huge flare with no end in site. My doc has been awesome to give me pain medications to help deal with this pain. We are in the process of trying all the IC meds. Right now I'm on Elmiron, Lortab azo standard and prelief.

    I am getting so discouraged and I just want to feel good. Right now I'm lying in the bed with a heating pad. I wish I were out enjoying the day with my husband and my 1 and 3 year old. How do you deal when the pain is a constant burden??? Thank you all for listening.
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    • #2
      to the IC Network family. I'm sorry you have IC, but at least you know now and can begin to deal with it.

      Are you following an IC diet? If not, I suggest you begin today --- you'll find the latest food list at the link in my signature below. Some ICers find that single step helps more than anything else.

      Just remember that it can take a while to find the most effective treatments for each of us, but most of us do get there --- and most of us feel good most of the time.

      Sending warm healing thoughts,
      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

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        • #3
          hey...i so understand how u feel. i was recently diagnosed also and it is a very frustrating condition and process to go through. deal with it the best you can,as with all unexpected curve balls we get thrown in life. find support from other ic patients or trusted friends,healthcare practitioners.follow the diet to a tee.experiment with treatments and most importantly never ever give up on yourself. you will find something that works for you.it just takes time. i have confidence in you. pm me if you ever need anything. welcome to the forums
          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.

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            • #4
              Thanks to both of you. The diet is one thing that I can work on more. I have cut coffee, citrus beverages, and soft drinks. I guess now it's time to actually focus on the food. Tonight I'm going to a movie with my sister. It should be fun. I'm just hoping my bladder will agree with sitting through a movie. I hope you all have a great day.

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                • #5
                  I was in the same place you are in the beginning. It felt like such a burden on my life. I would go to bed with an ice pack on top of my pelvic area and a heating pad under me. I'd tell myself "just get through the night and don't worry about tomorrow." I was really scared it would never get better- but it did and I'm currently pain free. It took quite a while for the diet to have an effect on my bladder, and it took quite a while to find my triggers and medications that helped. It takes a whole lot of patience. Good luck, and I hope you see some improvement soon.

                    Comment

                    • #6
                      I remember getting home from the hospital, after a cystoscopy and diagnosis of IC. I had never heard of it! My husband got online and starting researching it. He starts reading all the things I'm supposed to give up..."no coffee, tea, alcohol, chocolate, tomatoes, acidic food, spices..." WHAT??!! I thought he was pulling my leg... how could any disease (especially the bladder) keep me from eating and drinking everything I loved to eat and drink?? My family is Italian! Tell my family I can't have tomatoes and vinegar or chianti!

                      But, all the diet sacrifices are worth it. And family and friends will (try to) understand.

                      It all starts with the diet. Sounds like you are on your way... just try to eliminate the big food offenders, and take Prelief as a safety net. You'll see relief from that excruciating pain.

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                        • #7
                          Welcome !

                          I still struggle sometmes, but it gets alot easier once you have accepted it and can say "ok im in a flare and im going nuts! but I know that it will pass and I will be ok again soon"... I find that eating TONS of leafy green veggies helps alot with alkalizing your urine so it doesnt burn in your bladder. I make veggie smoothies every morning. I also found that drinking a bottled water with a higher PH (7.8) REALLY makes a difference. There is so much to learn but it gets easier.

                          Sometimes when im feeling really good, (like today) I question if I even HAVE IC. Which is yes, I do, but the fact that I can have normal days again is amazing when I have been through so much pain. Believe it will get better and baby your body

                          Good luck! (You can also PM me too! Im always willing to help)

                          Jenn
                          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!

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