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  • an 8-10 year remission

    I came down with IC in 1996.....struggled for a couple of years after an initial very bad phase...was out of work for 2 months. I never did anything invasive..I have a lot of urethral pain and, therefore, felt like anything invasive would make things worse. After a time, I began watching preservatives in food like potassium sorbate because I noticed those fake coffee creamers gave me wicked spasms...I had read some literature on potassium and figured maybe there was a connection. I stayed away from anything diet, fake, tried to eat a lot of greens and watched sugar intake. I literally had no symptoms for a good 8 years and was pretty much eating anything I wanted-except diet stuff. Then about a month ago my remission ended. I have been struggling both mentally and physically. I now have a daughter and am in a relationship-when I was sick before I had neither. I had had a couple of twinges over Christmas, but then went full blown in mid-January. One thing I noticed was that I had accidentally uses a Marinara that had wine in it-I had eaten it for 3 days in a row because I had a lot left over. Anyway-I do want to give people hope-I had a very long break from this curse without doing anything invasive or costly.....you never know.

  • #2
    Sorry you are feeling poorly! I too had a long remission (about 5 years); I was on Elmiron but other than that I really didn't watch what I eat (I was not and still not that diet sensitive), I had a hyster. in 2000 and after that it all went down hill. I am back to pretty much my oldself, again like I said I am on Elmiron still and Neurontin; and have hydros every 8 months or so. I am not too diet sensitive but I watch what I eat especially if I don't know who fixed it (like today they are having a Black History luncheon and it all looked so good but since I didn't know who cooked it I am passing on it (might have some dessert as it looks pretty harmless).

    Comment


    • #3
      Hi Mary, Congrats that you had 5 good years! I hope and pray I get there too...like you, I don't seem to be all that diet sensitive because in October, I was diagnosed, had 5 Elmiron treatments while starting oral Elmiron and I was in total remission for 2 mos. before falling out again. I've now had 11 new treatments, but have stopped coffee, am taking prelief with everything and watching what I eat just in case. Can you tell me what you did in the beginning that helped you get into remission for 5 years? Stress relief, stopped caffeine, etc.? Also, how did you get back on track after your hyster? Thanks for sharing, I am 44, with a 4 yr. old and a 6 yr. old. (first was invitro, 4 yr. old was a little miracle). I am facing menopause one of these days, so am especially concerned about what happens after menopause with IC. Thank you!!!
      Hugs to my IC pals!

      -Michelle
      Wife and mom of 2 kiddos (11 & 13). I am 51 years old
      Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
      Elmiron instills gave me 2 full months of total remission until January of 2011
      Started Elmiron on 10/22/2010 (200mg twice per day)
      Started Elavil 20 mg. in 2/2011 - 8-2012
      Started 25 mg. Hydroxyzine in July 2011 - 10-2012
      Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
      Tums with any possible caution foods, now I take nothing but Hyophen if needed
      Started running in February of 2011, yoga in 2012 to current
      Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
      No longer using any supplements
      Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!

      Comment


      • #4
        to mmarsh:

        I can't remember what I did to go into remission. I know for awhile there I was doing the DMSO treatments along with Elmiron, so I guess that was it? Now I wouldn't say that I am remission; I do watch what I eat, I gave up coffee for the most part, drink 1 cup of coffe in the morning while getting read for work.
        As for getting back on track after hyster, I had some more DMSO treatments and upped my elmiron. I do have hydros every so often and that helps also.

        Strees is a big factor, I have to watch out for that-I have a boss now that is __________ (fill in the blank here). she stresses me so much that besides my bladder my BP and heart rate goes way up as to one time the doctor told me to go to the ER, so I went.

        Comment


        • #5
          Thank you Mary!! Boy, your story sounds like mine! I work as an HR Director - very emotional and intense, as is my boss. My uro said that he didn't think food is my issue since after those 5 initial treatments in the office, I went into total remission for 2 whole months during the 2010 holidays. As soon as I went back to work, BAM! I had another flare on 1/4/11. It has taken 11 treatments this time, excercise, NO coffee (I am SO sad), NO wine, etc. Mary, when did you venture into having just one cup of coffee each day? Did you have a tough boss back when you first were diagnosed with IC or were you going through an emotional time? I think that this stress thing is really powerful. Thanks so much for writing me!!
          Hugs to my IC pals!

          -Michelle
          Wife and mom of 2 kiddos (11 & 13). I am 51 years old
          Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
          Elmiron instills gave me 2 full months of total remission until January of 2011
          Started Elmiron on 10/22/2010 (200mg twice per day)
          Started Elavil 20 mg. in 2/2011 - 8-2012
          Started 25 mg. Hydroxyzine in July 2011 - 10-2012
          Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
          Tums with any possible caution foods, now I take nothing but Hyophen if needed
          Started running in February of 2011, yoga in 2012 to current
          Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
          No longer using any supplements
          Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!

          Comment


          • #6
            mmarsh: I work for the State so I have had a few positions and bosses...too many to count.
            One of the bosses that was always writing me up was a single person and didn't understand why I was always out with my young son for sickness/fieldtrips when I had a husband as well. Plus doctors appointments for myself. ( I also have a heart condition)
            When I first started with this position, the boss was always going around and around saying to me "for someone so young why are you so sick?" it got to the point that the Uro (same one that I am seeing now) had to write a note to her explaining what IC was and that these are my treatments. If she needed any other explaination than she can call him and they can have a in person conference.
            After that boss left it was "smooth sailing" - they understood that I had kids and I needed to be out with them plus my various doctors appointments. Fast forward to last June and its been one thing after another. When she gets in her "moods" I try and stay away. It is getting so bad that the cardio doctor has offered to write her a note saying that I cannot have any stress as it aggrevates(?) my heart condition.

            I have never given up my coffee (just cut it down to 1 cup a day) I was never a big coke drinker but when I want something I usually get a 7-up or rootbeer; along with lots of water.

            Comment


            • #7
              Wow Mary, you have been through a lot!!! I think my stress at work is my main issue. I am now working out to try and relieve it, am on Elmiron (400 p/day) and Elavil 20 mg. p/day. You are fortunate to have been able to keep your coffee. I am too afraid of a flare to start it up again, although when I had those two months of total remission, I drank it and ate mexican food, etc. No flares whatsoever for two full months, and believe me, I ate it all and then some having lost 12 lbs. when first diagnosed. I lost 12 lbs. from freaking out about having this terrible thing. Then, your comfort foods get stripped from you such as coffee, chocolate, wine. You know. Anyway, I surely hope that I can be as fortunate as you have been. I wish I knew your secret. Either way, I hope you continue to feel good. Thank you so very much for writing me with all of this information!!! xo~M.
              Hugs to my IC pals!

              -Michelle
              Wife and mom of 2 kiddos (11 & 13). I am 51 years old
              Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
              Elmiron instills gave me 2 full months of total remission until January of 2011
              Started Elmiron on 10/22/2010 (200mg twice per day)
              Started Elavil 20 mg. in 2/2011 - 8-2012
              Started 25 mg. Hydroxyzine in July 2011 - 10-2012
              Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
              Tums with any possible caution foods, now I take nothing but Hyophen if needed
              Started running in February of 2011, yoga in 2012 to current
              Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
              No longer using any supplements
              Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!

              Comment


              • #8
                I wanted to mention that during the MOST stressful time in my life I had practically no IC symptoms.....I think this disease or syndrome or whatever presents so differently in everyone. My daughter was having huge meltdowns in school-was hospitalized-had to go to special schools, etc. It was a total nightmare and I never had bladder symptoms. My anxiety went through the roof and I was put on Clonopin. I'm glad I have it now because it helps with the pain

                Comment


                • #9
                  I can relate

                  Hi Lindeee

                  Wow I can relate to you 100%. Did you have any test taken at all? I had the same thing happen to me at Christmas and in January. I was eating alot of red sauce for days in a row and things with wine in them. They say the wine burns when cooking but it still affects you. I now can't seem to get rid of this imflammation. On meds right now and feel as long as I am on them. I am following my diet but still not in remission yet. How are you feeling now? Thanks Barb

                  Comment


                  • #10
                    Hi Barb..I have really been researching the possibility that this is an overload of histamine brought on by the sauce and a few other things I was doing. I just started on some supplements-I'll let you know. The pain has been VERY bad some days. Vicodin and Ultram are useless on those days-nothing helps but my anti anxiety meds. It has been devastating. I've been flaring for over 2 months now after so many years of no pain.

                    Comment


                    • #11
                      Hi, Hope you are doing better. I was back on Macrobid. 100mg a day. I did not take one for 2 days now and I am ok now but I hope it last for a while. I quess I will see. I will be going back to the Urologist on the 6th of April. I do believe it could be allergy related or just due to decline of hormones. I think I am very dry and it is a feeding ground for bacteria and such. But at this point I will take whatever helps me. Keep me updated !

                      Comment


                      • #12
                        I feel your frustration, I too had a wonderful 6 year remission, during which I got married had 2 kids and could eat and drink anything I wanted. I was also on no medications for my bladder during this time. Out of the blue my IC came back in 2008. I remember feeling the twinges while taking a spinning class at the gym. To this day I have not taken another spin class, not sure if that is what trigger the flare, it could have been years of not watching my diet that finally put my bladder over the edge.

                        It was a tough first year, finding a new uro, finally going on elm iron, changing my diet, and experimenting with different meds. I never thought I would see another remission again, I figured I got one, maybe that's all I will get. Slowly, I began to improve. This time last year my doctor switched me from elavil to lyrica, and that is when things really started to improve. I am in remission again, but I do watch my diet, take my elm iron faithfully and only us Lyrica if I have a food induced flare. Have faith, remission will come, just maybe not as quickly as we would like. I know I will never take my remissions for granted again. Hope you feel better soon.

                        Comment


                        • #13
                          Hi Teri, thanks for this. Can you tell me why your dr. switched you from Elavil to Lyrica? I've been on 20 mg. of Elavil for a little over a month and am doing well, but have gained 7 lbs. I'd love to go off, but my dr. would like me to stay on it for 6 mos. Any side effects with Lyrica? Thanks!
                          Hugs to my IC pals!

                          -Michelle
                          Wife and mom of 2 kiddos (11 & 13). I am 51 years old
                          Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
                          Elmiron instills gave me 2 full months of total remission until January of 2011
                          Started Elmiron on 10/22/2010 (200mg twice per day)
                          Started Elavil 20 mg. in 2/2011 - 8-2012
                          Started 25 mg. Hydroxyzine in July 2011 - 10-2012
                          Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
                          Tums with any possible caution foods, now I take nothing but Hyophen if needed
                          Started running in February of 2011, yoga in 2012 to current
                          Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
                          No longer using any supplements
                          Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!

                          Comment


                          • #14
                            Hi Michelle,
                            I was referred to a pain specialist that my uro works with to see if we could better control my flares. I always have a lot of burning pain, especially in the urethra. I hated getting instills, so we looked at different options. Immediately the pain doctor wanted to take me off elavil and try Lyrica. He had a lot of success with it for his IC patients and patients with overall pelvic pain. Lyrica targets nerve pain, that is the burning pain. It is indicated for Fibromayalgia and diabetic nerve pain as well as shingles nerve pain, but it will work on any kind of nerve pain. He believes in calming down all those nerves in the bladder and urethra that are over firing from all the inflammation. I will tell you Lyrica is known for weight gain too. I didn't gain weight, but I responded well at a low dose and was able to wean off and use it only on an as needed basis. I think in the beginning I took 100mg a day for about a month. I started feeling so much better, I went down to 50mg a day to only using it when I have a flare. When I say flare, that means for me any type of bladder symptoms, frequency, burning etc. When I'm not in a flare I have no symptoms. I hope this info helps. Good Luck! Teri

                            Comment


                            • #15
                              I have not posted on here in ages. I would say I have been in remission for about 2 years. I have mild flares once in awhile but they never last for more than a few days at most. Physical therapy was the greatest key to my feeling better. I did take Elmiron for awhile but weaned off and have not felt the need to go back on. A few foods are very bad for me, bananas and asparagus leaving my in terrible pain. Stress is not a factor for me. Haven't really thought about my IC much until yesterday when I went for a CT with contrast. As they started the IV contrast, they said I would feel warm in 10-15 seconds. I swear it hit my bladder like a fire in about 20 seconds. I am in pain still but trying to flush it out with water. Just wanted to show my support of those who haven't seen remission yet. I can and does happen and when we have minor flares, they are manageable and we can continue on normally.
                              [FONT="Comic Sans MS"
                              Lisa
                              Mom to:
                              Matthew & Christopher-13 1/2 years old
                              Ryan-9 1/2 years old
                              Wife to John since May 4, 1996

                              DX with IC after PST 10/18/07
                              Lithotripsy for L Kidney stone-8/14/07
                              Cystoscopy & Biopsy-6/18/07 Mass in non-cancerous
                              CT Scan-6/5/07 F/U for bladder mass and kidney calc
                              Cystoscopy-5/30/07 Doctor found bladder mass
                              Pelvic and Renal U/S-5/15/07 Calcification of L kidney
                              Hypothyroidism DX 10/95
                              Possible SLE, currently diagnosed as Undifferentiated Connective Tissue Disease as of 4/10

                              Currently taking: Synthroid 88mcg, 1000iu Vitamin D3


                              [/FONT]

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