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  • Mild Case for Years, then Worse - Is This Unusual?

    I find it intriguing that I had such a mild case of IC for years that my life was relatively unaffected. I might have had a flare for a week or two, then I was "healed" and then I could eat, have sex, carry on as usual. It may have been years between flares and my Cysto w hydrodistention caused my physician to say ,"I've seen worse."

    Than, as of last August, I had a "flare" that has become permanent. I certainly never heal. I have to watch everything I do ,etc., etc.

    The etiology, in my opinion, points to a worsening condition, something like an autoimmune thing going on.

    Has anyone else on this forum had the same kind of situation as me-----

    mild case, flares with definite remissions, and then , permanent pain requiring intervention?

    Has anyone read of IC occurring in a way such as mine did? Is this unusual?
    Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

    Medicines:
    Claritin 10 mg/AM for MCAS and allergies
    Synthroid
    Aciphex 20 mg in PM for GERD
    Zantac 75 mg, one at night for MCAS and GERD
    Singulair 10 mg in AM, for MCAS & allergies
    Zyrtec 5 mg/PM for MCAS and allergies

    Non-Medicinal Helps:
    glucosamine 500mg/MSM 500mg 2 X/day
    I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

    I can do all things through Christ which strengtheneth me. (Phillipians 4:13)

  • #2
    It's possible that it was the hydrodistention that put you into a long remission. Have you talked to your doctor about possibly having another one?

    Donna
    Stay safe


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    Comment


    • #3
      ICDonna

      I do not think the cysto w hydrodistention did anything for me.

      I'm describing experiences PRIOR to the cysto - flares, remissions.

      If anything, the cysto hurt for about a day, helped for about one day and then, nothing. Honestly, the doctor had not put any "helping" meds (instillation) into the hydrodistention at that time, only saline, I think.

      To tell you the truth, I'm trying real hard to avoid another cysto.
      Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

      Medicines:
      Claritin 10 mg/AM for MCAS and allergies
      Synthroid
      Aciphex 20 mg in PM for GERD
      Zantac 75 mg, one at night for MCAS and GERD
      Singulair 10 mg in AM, for MCAS & allergies
      Zyrtec 5 mg/PM for MCAS and allergies

      Non-Medicinal Helps:
      glucosamine 500mg/MSM 500mg 2 X/day
      I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

      I can do all things through Christ which strengtheneth me. (Phillipians 4:13)

      Comment


      • #4
        I've heard more that IC isn't usually progressive after the first year or two. (But others have had different experiences.) I've had IC for nearly four years....after the first year I was mostly in remission exept for the occational flare. But, major life stress and hormone changes put me back into a flare that I'm still trying to get under control.

        That said, is there anything that you have done differently...or are there other stressors that may have affected your ic? Stress is a big one...and I know others have talked about hormone changes affecting IC...so if you are peri-menopausal...that might play a part. I hope this makes sense.

        Have you tried some of the meds like elmiron or atarax, elavil, etc. They might help you feel better and give your body time to heal.
        mom_in_ma

        Comment


        • #5
          Mominma

          Thanks for the response.

          It's difficult for me to see any stressors that predate this particular flare esp. since I've had even worse stressors in the past and they didn't bother my bladder at all. I'm menopausal and, believe me, the peri-menopausal stage was extremely stressful, but my bladder was okay. No kidding.

          The only explanation I could come up with was that when this episode began last July, I think I may have had an infection - which was treated.

          Also, just prior to this permanent flare, since I had been doing so well for years, I had been taking a multivitamin w minerals and also a fiber supplement with potassium. Immediately after this flare occurred, those two supplements really became impossible to take and have been ever since. Maybe I hurt my bladder lining with them? Who knows?

          For years, just sticking with the diet was all I needed.
          Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

          Medicines:
          Claritin 10 mg/AM for MCAS and allergies
          Synthroid
          Aciphex 20 mg in PM for GERD
          Zantac 75 mg, one at night for MCAS and GERD
          Singulair 10 mg in AM, for MCAS & allergies
          Zyrtec 5 mg/PM for MCAS and allergies

          Non-Medicinal Helps:
          glucosamine 500mg/MSM 500mg 2 X/day
          I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

          I can do all things through Christ which strengtheneth me. (Phillipians 4:13)

          Comment


          • #6
            I have a similar situation. My IC symptoms began suddenly in the spring of 2000 which is also the first year I developed springtime allergies. After that first initial flare I have been fairly symptom free until this year when I again had the worst case of hayfever ever. I stopped my allergy pills for 4 days and wham I was hit with the IC again only worse. I was diagnosed with fibromyalia last fall and had a miscarriage a year ago which has thrown my hormones all over the place. I'm sure these things didn't help. I also recently started taking a liquid multi-vitamin mineral which contains citric acid. I am sure it's a combo of everything but I'm worried now I'll never get back to a good place again.
            The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
            First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
            Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
            Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
            Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
            BABY GIRL 10/28/08 *** BABY BOY 7/8/11

            Comment


            • #7
              I woke up one day in Jan 07 with such severe pain I went to the ER - they couldn't find anything but said it was possibly a UTI so put me on antibiotics - went through 4 different doctors until in March 07 when I was diagnosed with IC - I always urinated alot - at least 15 times a day but never knew that I had a problem. Anyway the pain is like razor blades between your legs. The new DR has put me on Elmiron, Elival, and tramadol for pain when needed. He is doing the bladder installations once a week and it really seems to have helped. Its a combination of 5 different medicines and the relieve after the first two instals is amazing. I have had 4 already and I'm a different person. Possibly these installations can work for you. This is my first post - Marie

              Comment


              • #8
                What are the 5 meds that go into your instills?

                Comment


                • #9
                  I can't say that my IC started like yours all I can say is that I was a mild case (although not correctly diagnosed at the time) for years some true UTI's, hormone fluctuations, and sugeries along with other health conditions contributing seemed to totally change things for me.
                  Faith, Hope, and Love,
                  Katrina


                  I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                  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.
                  or find me on facebook http://www.facebook.com/kat671?ref=profile
                  Be the Miracle! & Pay it Forward!

                  [email protected] please contact me...I am here to help!

                  Comment


                  • #10
                    when everyone talks about having a mild case for years, were you guys taking any meds or just watching the diet? Do you think it would have made a difference if you were taking meds if you weren't? that is my question, but then again I guess it would if they say you have to take the meds forever to stay better right?
                    Onset of symtoms November 1, 2006

                    Diagnosed December 8, 2006 with cysto/hydrodistention... Gradual relief with elmiron around month two, keep feeling better and better. and then remission

                    2008 Update...still in remission

                    Diagnosis: IC
                    Meds: Elmiron 300mg/day, hydroxyzine 25 mg 1x/day

                    Myspace: Add me! Im always looking make new IC friends. http://www.myspace.com/45171133

                    Comment


                    • #11
                      Not everyone has had to take meds forever to stay better...some people have weined off of meds, gone down dose....or had as mysterious feeling better as the accurance of their symptoms....I have needed to stay on meds....prior to getting bad yes I was on meds for Epilepsy (which includes neurontin) and was following a colitis diet sometimes and on antibiotics for that which tend to lesson some patients symptoms.
                      Faith, Hope, and Love,
                      Katrina


                      I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                      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.
                      or find me on facebook http://www.facebook.com/kat671?ref=profile
                      Be the Miracle! & Pay it Forward!

                      [email protected] please contact me...I am here to help!

                      Comment


                      • #12
                        Bam

                        When I was a "mild" case, the diet is all I needed to be well. I had been on atarax (an antihistamine) for a short while, and elmiron a very short while.

                        As I prefer to stay away from meds if I can, I do not know if taking meds allows you to eventually eat anything?

                        My experience has been that once you have this IC diagnosis, you may have remissions and good times, but eventually, you may find that ingesting anything can cause problems. But, you could, theoretically, "get away with it" for a while. Sooner or later you are reminded that your bladder lining does not respond normally.

                        That's my opinion. But, everyone's different.
                        Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

                        Medicines:
                        Claritin 10 mg/AM for MCAS and allergies
                        Synthroid
                        Aciphex 20 mg in PM for GERD
                        Zantac 75 mg, one at night for MCAS and GERD
                        Singulair 10 mg in AM, for MCAS & allergies
                        Zyrtec 5 mg/PM for MCAS and allergies

                        Non-Medicinal Helps:
                        glucosamine 500mg/MSM 500mg 2 X/day
                        I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

                        I can do all things through Christ which strengtheneth me. (Phillipians 4:13)

                        Comment


                        • #13
                          but if the meds get rid of the symptoms, why would you want to stop them? Are people thinking long risk damage to their body b/c of them? I'm just so confused about all of this.
                          Onset of symtoms November 1, 2006

                          Diagnosed December 8, 2006 with cysto/hydrodistention... Gradual relief with elmiron around month two, keep feeling better and better. and then remission

                          2008 Update...still in remission

                          Diagnosis: IC
                          Meds: Elmiron 300mg/day, hydroxyzine 25 mg 1x/day

                          Myspace: Add me! Im always looking make new IC friends. http://www.myspace.com/45171133

                          Comment


                          • #14
                            Bam

                            When I was a mild case, the diet is all I needed. I had no desire to take meds I didn't need. That's my preference, to treat things naturally first. I tend to get side effects from the meds. But, that may not be true of you. Maybe you do not want to be on such a restricted diet? Is that what you are saying?

                            Are you asking - "Once you take meds, can you eat anything you want?" And, "If the meds allow me to eat anything I want, why would I ever stop the meds?"

                            Other people on this forum may be able to tell you whether staying on meds has allowed them to be more free with their diet. I do not know.

                            I'm not clear on what you are asking?!
                            Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

                            Medicines:
                            Claritin 10 mg/AM for MCAS and allergies
                            Synthroid
                            Aciphex 20 mg in PM for GERD
                            Zantac 75 mg, one at night for MCAS and GERD
                            Singulair 10 mg in AM, for MCAS & allergies
                            Zyrtec 5 mg/PM for MCAS and allergies

                            Non-Medicinal Helps:
                            glucosamine 500mg/MSM 500mg 2 X/day
                            I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

                            I can do all things through Christ which strengtheneth me. (Phillipians 4:13)

                            Comment


                            • #15
                              Originally posted by futurehope View Post
                              When I was a mild case, the diet is all I needed. I had no desire to take meds I didn't need. That's my preference, to treat things naturally first. I tend to get side effects from the meds. But, that may not be true of you. Maybe you do not want to be on such a restricted diet? Is that what you are saying?

                              Are you asking - "Once you take meds, can you eat anything you want?" And, "If the meds allow me to eat anything I want, why would I ever stop the meds?"

                              Other people on this forum may be able to tell you whether staying on meds has allowed them to be more free with their diet. I do not know.

                              I'm not clear on what you are asking?!
                              oh no I will never eat exactly what I want again...I don't even want to take a chance and food isn't really that big of a deal for you plus the risk of a flare is just not worth it to me, I have taken this fact very well actually, and am lucky b/c I only really drank water before my diagnosis and don't like marinara sauce or much italian food. my only problem is that I am 1/2 korean and we tend to eat a lot of spicy food, that is my only "wish I could eat this" food.

                              I'm just so confused about why people do not take the meds that are available if they do not have side effects from the meds. My doctor told me it was good that we found it so early bc the meds would also help not to make it worse, so if this is the case why isn't everyone taking them (even if it is only mild) to prevent further deterioration of IC? Thats why I am so confused about the whole progressive aspect of IC, I just don't know what to think. But I mean I don't look down on anyone who doesn't b/c of natural reasons or anything, I was just wondering why if they don't have negative effects and it stops it from progressing. I hope that helps clear it up a lil.
                              Onset of symtoms November 1, 2006

                              Diagnosed December 8, 2006 with cysto/hydrodistention... Gradual relief with elmiron around month two, keep feeling better and better. and then remission

                              2008 Update...still in remission

                              Diagnosis: IC
                              Meds: Elmiron 300mg/day, hydroxyzine 25 mg 1x/day

                              Myspace: Add me! Im always looking make new IC friends. http://www.myspace.com/45171133

                              Comment

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