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  • #16
    Bam,
    I don't take any meds for IC except for Percocet when I'm in pain. My reason is because when I was first diagnosed 13 years ago my doctor had me try every med possible. I don't like the way I react to medications, I didn't like feeling sleepy all the time, the dry mouth, etc. BUT most of all, nothing seemed to help me with my symptoms anyway. I'm sure maybe if they would have helped me then I would have put up with all the side effects, but to me, the side effects weren't worth it, because they didn't seem to be helping me anyway. So I just take percocet when I'm in pain, and maybe some baking soda with water if I need it, but that's about it. I did all the instills and everything also, and that didn't seem to help me either. Am I making any sense? That's why I don't take any meds either. I try to just stick to the diet, that seems to help the most.

    Hope that helped,
    Kari
    Kari

    I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

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    • #17
      The meds are Heparin, Marcaine, solucortef, sodium bicarb and gentamicin. The meds get combined and are installed via a catherer. Process takes about 5 minutes. I must say after the first treatment there was no relief - possibly worse - but after the 2nd treatment started to feel relief. Hope you get under control soon. Keep me posted. marie

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      • #18
        Bam

        Speaking for myself, the doctor "treating" back then (late 1990's) NEVER said anything to me about the fact that this could progress if I didn't continue to take meds.

        He did not have that knowledge, nor did I.

        So, I based my decision not to take meds on the fact that, "this was as bad as it was going to get" and "being on the diet is helping".

        That is why I posted this thread. I wanted to know if IC HAS progressed for anyone else besides me?
        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)

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        • #19
          I know I've been told it doesn't progress, and read it too. I certainly don't believe it!!!!!!!!

          Comment


          • #20
            I am very new to IC but if I'm able to tolerate Elmiron then I will certainly give it a fair shot. Right now I'm just taking Atarax 25 mg per day and hoping that will make a difference soon. Who knows what the longterm side effects of these drugs are but I would feel better about taking something to rebuild my bladder lining because it seems to me like it's fixing the source of the problem to the best of our knowledge. But again I'm new to this and I can understand people wanting to take a more holistic route -especially if they have side effects to Elmiron or haven't noticed a difference. I would love to be able to eat and drink foods again without having to worry about my bladder lining so for me it would be worth it. I have been in the foulest mood the past few days due to lack of coffee. I actually started crying at Whole Foods yesterday trying to find some safe foods. I bought vanilla nut Teeccino which actually tastes very similar to coffee but was afraid to drink much of it because it's high in inulin which is a type of fiber that irritates my IBS and makes me more constipated. And it didn't give me the same mental effect as coffee either! My poor husband is so confused. He says it seems like my food limitations change weekly so he never knows what's safe for me to eat. I was on a very strict food allergy diet a few years back and then I was on Weight Watchers and now this. He didn't understand why I wouldn't drink apple juice today! Charisse
            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

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            • #21
              IC returned worse

              I think I am just like you! I first had IC symptoms in 1994 (although it took two years to diagnose). It was mild and I controlled it with diet. I could even eat tomatoes like once a week and pineapple once a week, and even occassional alcohol. About a year or so in I went on an anti-depressant for depression not IC since IC wasn't a problem (and I don't think they even knew back then that anti-depressants helped some IC).

              I really thought I was cured because as the years passed I progressed into eating and drinking anything and was only reminded I had IC if I ate too much citrus (like 5 days in a row).

              However, my trigger was getting really sick from the Elmiron in 3/04). It took 8 months to get it out of my system and 10 days after I finally felt human again my bladder started to hurt like an infection at first. I NEVER THOUGHT MY IC COULD BE SO BAD. I've posted this other places on these boards but the short of it is that I spent four months sleeping in the bathtub, not tolerating any foods, any meds, any topical products or even chemical smells, and peeing about 65 times a night and living to pee during the day. My body seemed to get worse and worse as all my systems (adrenal, thyroid, etc., seemed to just tank). I did a lot of research, tried to go back on anti-depressants since I thought that might have been a help, tried IC meds and even some alternative health. However, all I could tolerate was Cystoprotek, dried aloe, zyrtec, hormones and IC diet.

              Anyway, the good news is that while I am not back to cured and I still have to be careful with diet, meds, vitamins, sex, I am almost pain/symptom free! I'd say it took from 10/04 doing diet and herbs, and then my first and only hydro in 1/05 to have about 50% relief. Then, it took about 3 more months to feel like I was reentering the human race. I had very bad night time symptoms and it took about 16-18 months for those to go away (I really thought they wouldn't).

              So, if you were seemingly in a remission once, perhaps like me you will regain it with smart choices and enough time.

              I try to remind myself that should it ever get really bad again I can cling to the knowledge that it just takes time for my particular body to 'get back'. It's really interesting for me -- I literally worked my way up to eating onions, sour cream and soda as of a few months ago and then I took a nasal allergy medicine for only three days. It did such damage to my progress in those 3 days that after 90 days I still can't eat onions or cheesecake with sour cream without having to ache, hurt and get up every 20 minutes at night with urgency/frequency (but just for one night).

              I HOPE you will be like me and have it calm down again. It has now been 2 years and 9 months since mine came back in a way that was so bad I would have ended up on disability or pain meds if it had continued. Now, as I said, when careful with food and activity choices, I can be virtually pain free.

              Good luck!
              Laura D. in Florida

              Share your poems and art about living with IC, and your IC-friendly recipes at www.art4ic.com



              IC since 1994: primarily utilize herbal/natural treatments due to intolerance to many medications. Daily: Marshmallow Root Tea, Hormones, Cystoprotek, Desert Harvest Aloe Vera, Claritin, and relatively strict adherence to IC Diet.

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              • #22
                Laura wow you've come a long way!! So can you tell us what herbs and diet you used? Also which nasal spray gave you a reaction? I've been using a nasal spray for my allergies too and am hoping it's not making me worse. I had my first flare in 2000 and then some minor flares in 2002 and then was fine again until this past year so that gives me hope that maybe someday I'll be out of this pain again. Patience!!!
                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


                • #23
                  I have a "severe case of IC" probably from not being treated right away? It took about 5 years for the doctors to actually figure out what I had. Up till recently though, I think about 3 years ago was I told that I had this severe of IC, I have done in the past the DMSO treatments (3 different times - first 2 times helped, the last time didn't); I have been on Elmiron since it has been on the market (1997) also have had hydro's done every 6-8 months for the last 4 years. Diet. Pain meds as needed. That is the only things that my Uro & Cardio doctors will agree on.
                  As for progressing, I have heard only maybe the first year or two.

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                  • #24
                    My IC progressed as well I think as a result of not being properly diagnosed or treated early on. I had everything checked except my bladder, and then once I was dxed it took all sorts of docs to get a decent opinion.

                    Hugs,
                    Barb
                    (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

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                    • #25
                      Yes me too, just like Barb.

                      Sending hugs, Trishann

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                      • #26
                        Herbs I use

                        Since you asked, I use:

                        Marshmallow Root which I steep as a tea and drink twice a day

                        Desert Harvest freeze dried aloe vera

                        Algonot Cystoprotek (which is chondroitin, quercetin and glucosamine sulfate)

                        The diet is mostly from the usually Ok list from the Ic-network diet page.

                        Thanks!
                        Laura D. in Florida

                        Share your poems and art about living with IC, and your IC-friendly recipes at www.art4ic.com



                        IC since 1994: primarily utilize herbal/natural treatments due to intolerance to many medications. Daily: Marshmallow Root Tea, Hormones, Cystoprotek, Desert Harvest Aloe Vera, Claritin, and relatively strict adherence to IC Diet.

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                        • #27
                          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.
                          yes that and side effects and if you don't need the meds .....or something without the same risks or side effects helps equally well it can be the better option. One of my friends has no idea what she did that put her into remission but she is not on any treatment for IC anymore when at one point she needed multiple meds and still had some symptoms.

                          In my case I have attempted to go to lessor doses and switch to alternatives when things improve. Unfortunatly my remissions are not as long lasting as my friend but for me it is side effects that want me off of meds the most. I don't always think about the long term problems till the problem arrises.
                          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
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                          • #28
                            I'm the exact same way. I had my first flare when I was 12 (I'm 23 now), and after a few months it went into almost complete remission...for 8 years! In that time, I had occasional mild discomfort, but I lived a very normal life and hardly thought anything of it. I didn't know what IC was; I just thought I had a "weird bladder." I don't even consider myself as having had IC until I was 20, because it was then that I started having major discomfort every day. I haven't heard of many people who had a mild case for so long before IC really hit, but I'm glad I'm not alone.
                            I have: Interstitial Cystitis,Eustacian Tube Dysfunction, IBS, Sciatica.

                            I take: Elavil 50 mgs, Balziva birth control, and Elmiron instillations.

                            I am: Not my disease.

                            My Myspace Page: http://profile.myspace.com/index.cfm...iendid=4249067

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                            • #29
                              Nasal Spray

                              Just realized I forgot to answer the question about the allergy nasal spray that hurt me so bad. - It was Nasonex and taking it only 3 days caused me a 2-week flare and completely stripped me from being able to eat the foods I had worked up to in the last year -- onions (small quantities cooked until clear), sour cream in cheesecake, etc. It has been about 3 months and I try every few weeks and still can't eat them. WAAH.
                              Laura D. in Florida

                              Share your poems and art about living with IC, and your IC-friendly recipes at www.art4ic.com



                              IC since 1994: primarily utilize herbal/natural treatments due to intolerance to many medications. Daily: Marshmallow Root Tea, Hormones, Cystoprotek, Desert Harvest Aloe Vera, Claritin, and relatively strict adherence to IC Diet.

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                              • #30
                                Nasonex is what I'm using! But my first and worst flare was before I ever used it so I'm not sure there's any connection for me. I just went home at lunch and took some so we'll see.
                                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

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