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  • Two years healing, remission for five years now, what worked for me.

    I have a success story and I want to share it.

    I was diagnosed in 2009 and had the test where they put a camera up you and take a peek at your bladder, which I found exceedingly uncomfortable. One of the worst parts of that was how much it hurt to pee afterwards, but it went away in a few days.

    I did not have ulcers on my bladder lining.

    Anyway, I felt terrible urgency, even right after urinating. It was hard to do something as simple as go for a walk outside, because I knew the whole time I would feel like I had to pee.

    And I tried Elmiron but had a bad reaction to it, and figured it was best to not torture my body any more.

    It was pretty clear to me that my years-ago 15-cup-a-day coffee habit had probably worsened or maybe even triggered my bladder pain and urgency.

    Years earlier, I had cut down to just one or 2 cups of coffee a day, and then even switched to tea, but the damage had apparently already been done.

    I remember crying and wailing after my diagnosis, because I had some other health problems that were unrelated, and the combination felt overwhelming to me.

    I started taking Cystoprotek and desert harvest aloe. I stayed on the IC diet religiously.

    Two or three years later, my bladder had apparently healed itself, and is now functionally normal.

    So I would like to tell you that there is hope!

    Here is what I would advise, if I had a friend who had this and would do almost anything to heal it.

    Follow the diet, follow the diet, follow the diet. Quit complaining about not being able to drink coffee or tea, accept the new reality with all of your being, and move on and find something else to drink.

    I drink a lot of teeccino and chamomile tea and other innocuous hot drinks, often with milk in them, sometimes with milk and sugar.

    I think one of the most important things I did was dilute my urine. I consistently drank at least 120 ounces of fluid a day.

    I made a carafe of weak tea or something else on the diet, always on the diet, and made myself drink two full carafes, 58 oz each, every day. I think that created an environment where my bladder could begin to heal.

    I am also convinced that Cystoprotek was one of the most important factors in my healing.

    I could not always find it, Amazon did not always have it, and I noticed that they made an almost identical product called ProstoProtek, so sometimes I took that, and it seemed to be just as helpful.

    I also took an antihistamine called hydroxyzine and that seemed to help to and it's cheap. Apparently one component of this disease is mast cell activation, about which I know very little, and the antihistamines seem to help.

    I can tell I have healed because I can have coffee now, with no urgency. I stay on the diet anyway because I am not interested in a repeat of those episodes of pain and terrible urgency.

    At my worst, it seemed like my bladder would only hold about a tablespoon of urine before it signaled it was time to pee.

    It was awful — I couldn’t go anywhere or do anything, because I had to stay near a bathroom.

    Of course I couldn't sleep through the night, I was up every hour or two needing to pee, and that drove me crazy with pain and anxiety.

    Oh! One other drug helped me a lot. Remeron, also known as mirtazapine. It's a trycyclic antidepressant that tamps down nerve pain. It helped me sleep at night. Highly recommend, a very good drug for me, and one that I reacted really well to.

    So please, do not lose hope.

    My recommendation is that you create an environment where your body can heal itself by
    1. diluting your urine,
    2. sticking to the IC diet, and
    3. adding CystoProtec and desert harvest aloe vera.

    Hope this helps. It was about two years before I saw any improvement, you just have to stay the course and recognize that healing is often slow.

    We all want things so fast, and our culture moves so quickly now, that it’s easy to mistake a slow trajectory for no improvement at all.

    But I’ve long thought that the direction I was going was far more important than the speed, and this is a good example of why that's true.

    Best of luck to you all. Stay on the diet! Drink more fluid! Consider CystoProtek if you cannot take Elmiron!

    Cheers,

    Laura
    Last edited by purpletomorrow; 12-11-2016, 07:06 AM.
    -Laura
    • 61 yrs old
    • Diagnosed Feb 2009, but had IC for years before that;
    • Also horribly progressive, debilitatingly painful, severe vascular rosacea and erythromelalgia.

    • Stuff that helps me--
    - the IC diet
    - CystoProtek (wonderful stuff, highly recommended)
    - Vagifem (vaginal estrogen)
    - Remeron (Mirtazapine)- 30 mg nightly for depression and IC nerve pain
    - Hydroxyzine- antihistamine for IC

  • #2
    Re: Two years healing, remission for five years now, what worked for me.

    Thank you for sharing your success --- it gives all of us hope. And I'm so glad you're sticking with the program --- too often I see a message from someone who is in remission, then goes back to the old ways, causing a return of symptoms.

    HOORAY FOR YOU!


    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

    Comment


    • #3
      Re: Two years healing, remission for five years now, what worked for me.

      The diet is so difficult to stay on for me. I feel like an outsider when I have to stick to that bland diet. I am young and this disease is wearing me down. The diet depresses me. Kudos to those who can stick to it. I am sure they have worse diseases out there but this one is pretty horrible.

      Comment


      • #4
        Re: Two years healing, remission for five years now, what worked for me.

        Yes the diet is bland and could get boring however for many people it is the only way to control symptoms. I feel that it's more difficult for IC because this disease is largely unknown. For example no one would bat an eyelash when a diabetic declines cake. It is the same thing; by eating harmful foods you are hurting your bladder even more. It sucks that we have this disease but there's no use in feeling sorry for ourselves. Yes that is ok in the beginning and we need to vent and all that but acceptance needs to come in order for physical and psychological healing to begin.

        Life is not fair and this is our cross, that is the way I look at it. I am very religious and even I had one or two words with God asking him why?! Fortunately He was very patient and has slowly revealed to me that there is a purpose in this too. Even if you are not religious looking at it from a scientific point of view it makes no logical sense to continue to hurt your bladder and expect to feel better. The meds are not a cure, they are just there to help us cope with it.
        I was very young when first diagnosed as well and had symptoms since about the age of 16! There are many of us.

        Comment


        • #5
          Re: Two years healing, remission for five years now, what worked for me.

          Thanks
          Last edited by Ttal914; 12-11-2016, 03:27 PM.

          Comment


          • #6
            Re: Two years healing, remission for five years now, what worked for me.

            Hi there!
            I have been diagnosed for almost 25 years now....and I have not found that diet has been a factor at all with my Elmiron. Once the bladder is artificially coated, I have not have any flareups due to food. I drink diet pepsi like it is nothing (something that I need to stop), but I have had no issues.

            Not everybody needs to follow the diet. If you are new, I would perhaps try medications/diet whatever it takes to get it under control....but, maybe you can add normal food back after that? But, having said that....if you try everything and nothing is helping....definitely look at your food. Everybody is different. Nobody reacts the same to medication. Elmiron works for me and my body composition.....but, it may not work for you. There are so many treatments out there....just be patient. There will be a solution for you. I just wanted to let you know that there is a chance that you may not be so food sensitive since I am not.

            Please talk to you doctor....but, don't give up on food yet!!

            Cynthia
            Diagnosed in 1992
            Was part of the clinical trials of Elmiron in both Canada and the United States (successful)
            I also have IBS and anxiety/PTSD issues.

            Currently taking:
            Elmiron - 100 mg daily (I started with 3 pills but found that one worked so that I can increase in the future if I need to)
            Phenazo compound - as needed (uristat in the States)
            Citalopram - for anxiety
            Lorazepam - for anxiety

            Unsuccessfully tried:
            Rimso (DMSO) treatments - so extremely painful!!
            Elavil - caused so many side effects needing more medication..
            Doctors very nicely "cut" my urethra down the full length to allow it to enlargen so that my "bladder could empty properly".
            Of course, my Urologist was not happy that this was done by a hospital out of province during an exploratory hystoscopy for IC diagnosis (1992)

            Comment


            • #7
              Re: Two years healing, remission for five years now, what worked for me.

              Hi Ttal914,

              I understand how you feel, I'm young too and it is horrible to have bladder pain and urgency. I wake up each and every morning hoping that today will be a new day and the pain will go away but it's been 5 months straight of a dull ache in my bladder and this uncomfortable sensation that I have to pee 24X7 (does not go away)!!

              What else can we do but just be hopeful, I agree that this is horrible but we have to deal with this as best as we possibly can. I totally understand how you feel.

              Hugs
              Your body's ability to heal is greater than anyone has permitted you to believe

              I am 40 years old and have (2) children, ages 14 and 10. The bladder pain began on the month after my 40th Birthday.

              I have not had any procedures done, I have not been diagnosed with IC, I do not take any medications.

              I had a tubal ligation in 2006. I have (1) ovarian cyst which Dr. said is no problem. Have had over 30 UTI's throughout my lifetime.

              Comment


              • #8
                Re: Two years healing, remission for five years now, what worked for me.

                You didn't mention are you following the diet, it is something you can do for yourself and can really help improve your condition.

                You say you young to have this, unfortunately their is no age for it. I started having symptoms by about 9 years old.

                I know you think your young you should not have to be worried about such things. At least you have a diagnoses, I spent 20 years to get a diagnoses. A diagnoses gives you a direction to go in for treatment.

                Not to sound too harsh being young dies not give you a pass on diseases, you need to working on accepting that you have this and work n figuring out what treatment us going to work best for you.

                Acceptance changes your attitude towards dealing with IC or any disease.
                My are with you all. May you all find a way to peace and joy in your lives.

                Comment


                • #9
                  Re: Two years healing, remission for five years now, what worked for me.

                  Originally posted by purpletomorrow View Post
                  I have a success story and I want to share it.

                  I was diagnosed in 2009 and had the test where they put a camera up you and take a peek at your bladder, which I found exceedingly uncomfortable. One of the worst parts of that was how much it hurt to pee afterwards, but it went away in a few days.

                  I did not have ulcers on my bladder lining.

                  Anyway, I felt terrible urgency, even right after urinating. It was hard to do something as simple as go for a walk outside, because I knew the whole time I would feel like I had to pee.

                  And I tried Elmiron but had a bad reaction to it, and figured it was best to not torture my body any more.

                  It was pretty clear to me that my years-ago 15-cup-a-day coffee habit had probably worsened or maybe even triggered my bladder pain and urgency.

                  Years earlier, I had cut down to just one or 2 cups of coffee a day, and then even switched to tea, but the damage had apparently already been done.

                  I remember crying and wailing after my diagnosis, because I had some other health problems that were unrelated, and the combination felt overwhelming to me.

                  I started taking Cystoprotek and desert harvest aloe. I stayed on the IC diet religiously.

                  Two or three years later, my bladder had apparently healed itself, and is now functionally normal.

                  So I would like to tell you that there is hope!

                  Here is what I would advise, if I had a friend who had this and would do almost anything to heal it.

                  Follow the diet, follow the diet, follow the diet. Quit complaining about not being able to drink coffee or tea, accept the new reality with all of your being, and move on and find something else to drink.

                  I drink a lot of teeccino and chamomile tea and other innocuous hot drinks, often with milk in them, sometimes with milk and sugar.

                  I think one of the most important things I did was dilute my urine. I consistently drank at least 120 ounces of fluid a day.

                  I made a carafe of weak tea or something else on the diet, always on the diet, and made myself drink two full carafes, 58 oz each, every day. I think that created an environment where my bladder could begin to heal.

                  I am also convinced that Cystoprotek was one of the most important factors in my healing.

                  I could not always find it, Amazon did not always have it, and I noticed that they made an almost identical product called ProstoProtek, so sometimes I took that, and it seemed to be just as helpful.

                  I also took an antihistamine called hydroxyzine and that seemed to help to and it's cheap. Apparently one component of this disease is mast cell activation, about which I know very little, and the antihistamines seem to help.

                  I can tell I have healed because I can have coffee now, with no urgency. I stay on the diet anyway because I am not interested in a repeat of those episodes of pain and terrible urgency.

                  At my worst, it seemed like my bladder would only hold about a tablespoon of urine before it signaled it was time to pee.

                  It was awful — I couldn’t go anywhere or do anything, because I had to stay near a bathroom.

                  Of course I couldn't sleep through the night, I was up every hour or two needing to pee, and that drove me crazy with pain and anxiety.

                  Oh! One other drug helped me a lot. Remeron, also known as mirtazapine. It's a trycyclic antidepressant that tamps down nerve pain. It helped me sleep at night. Highly recommend, a very good drug for me, and one that I reacted really well to.

                  So please, do not lose hope.

                  My recommendation is that you create an environment where your body can heal itself by
                  1. diluting your urine,
                  2. sticking to the IC diet, and
                  3. adding CystoProtec and desert harvest aloe vera.

                  Hope this helps. It was about two years before I saw any improvement, you just have to stay the course and recognize that healing is often slow.

                  We all want things so fast, and our culture moves so quickly now, that it’s easy to mistake a slow trajectory for no improvement at all.

                  But I’ve long thought that the direction I was going was far more important than the speed, and this is a good example of why that's true.

                  Best of luck to you all. Stay on the diet! Drink more fluid! Consider CystoProtek if you cannot take Elmiron!

                  Cheers,

                  Laura
                  This made me cry when I read it because I am SUFFERING. My IC diagnosis was when I was 17 but suffered two years prior. I went into remission after hydro, bladder instilled, and elmiron but it took over a year. Fast forward 10 years and it came back out of nowhere worse than ever! The bladder and urethral burning are so bad! What's scaring me is that what's supposed to help makes me feel worse this time around like marshmallow root, and elmiron. I started cystoprotek but have only been on it for 5 days. I'm currently on atarax 25mg and oxybucinin with no relief of symptoms. This has been my life for 2 months now. I see my doc mid January and I know he's going to want to do a hydro again to see how things are looking. I'm praying that the cystoprotek will kick in eventually. I'm giving it a real shot by trying to be on it for 6 months. I already know my doc is going to want me back on elmiron but it causes me intense burning and bladder twitching this time around for some reason. Maybe I need to give it time. Next time I see my doc, I'm going to ask about Elavil. I'm trying to religiously stick to the diet, I only had carrots for dinner! I had cottage cheese for breakfast and it sent me into an all day flare. I cry every night now when I get home from work because I feel so distraught and scared. Sorry for the ramble.

                  Comment


                  • #10
                    Re: Two years healing, remission for five years now, what worked for me.

                    Originally posted by MT712 View Post
                    This made me cry when I read it because I am SUFFERING. My IC diagnosis was when I was 17 but suffered two years prior. I went into remission after hydro, bladder instilled, and elmiron but it took over a year. Fast forward 10 years and it came back out of nowhere worse than ever! The bladder and urethral burning are so bad! What's scaring me is that what's supposed to help makes me feel worse this time around like marshmallow root, and elmiron. I started cystoprotek but have only been on it for 5 days. I'm currently on atarax 25mg and oxybucinin with no relief of symptoms. This has been my life for 2 months now. I see my doc mid January and I know he's going to want to do a hydro again to see how things are looking. I'm praying that the cystoprotek will kick in eventually. I'm giving it a real shot by trying to be on it for 6 months. I already know my doc is going to want me back on elmiron but it causes me intense burning and bladder twitching this time around for some reason. Maybe I need to give it time. Next time I see my doc, I'm going to ask about Elavil. I'm trying to religiously stick to the diet, I only had carrots for dinner! I had cottage cheese for breakfast and it sent me into an all day flare. I cry every night now when I get home from work because I feel so distraught and scared. Sorry for the ramble.
                    Don't Give Up. You healed once you can do it again. I believe in you. It must really suck to be happy that it was gone and it come back like that. But you are stronger this time, you are wiser, you know what you need to do. Believe in your body and its ability to heal. The human body is amazing. Purpletomrrow's story of healing was absolutely beautiful and we all can get to that point or back to that point. Don't be scared you have many treatments options for you to try. Never give up hope you will find something that works for you. You are on the right track for healing. Great things take time and we are always here for you. Sometimes the light at the end of the tunnel is closer than you think!
                    "She Believed She Could So She Did"
                    PGAD/IC/PFD & Hip/Leg pain
                    On: Hydroxyzine HCL 10mg, Nortriptyline 10mg, Clonazepam 0.5mg, Uribel as needed, Tramadol 50mg as needed
                    Things I do everyday: Drink tons of water, Breathing Techniques (4-7-8), Ice/Ice Massage, TENS Unit

                    ***Diaphragmatic breathing***
                    • Make a daily routine!
                    • We can't control what happens to us, but we can control how we react!
                    • You can't predict the future, your next treatment may work!
                    • You never truly fail, if you never give up!
                    • Never Ever Giving Up!

                    Comment


                    • #11
                      Re: Two years healing, remission for five years now, what worked for me.

                      I have seen success stories regarding Desert Harvest aloe vera, but am nervous to buy and take the 3+ pills a day. I bought Nature's Way aloe vera and it states you shouldn't take more than 1 in any 24-hour period. It also said it's not for long-term use stating it shouldn't be used for more than a week or you will develop dependence. Is there something significantly different about Desert Harvest that it's okay to take as many as they recommend?
                      Tentatively diagnosed - awaiting cytoscopy

                      Currently taking:
                      Vegetable glucosamine HCl 1500mg w/ MSM 1000mg (Bluebonnet Vegetarian Glucosamine) *I swear by this!
                      Fiber powder (off-brand Benefiber) 2x per day
                      Prelief with most meals


                      Unsuccessfully tried:
                      Vesicare

                      Comment


                      • #12
                        Re: Two years healing, remission for five years now, what worked for me.

                        I have a very similar story to Purpletomorrow's, it took close to 2 years of intense dieting , trying a lot of supposedly bladder healing supplements, drinking a lot of fluids (mostly just water, some herb teas), and I am also in remission now, no more symptoms no matter what I eat or drink. I still follow the diet also but can allow some things like a glass of white wine, low acid coffee, tomato, BBQ sauce, citrus etc, on occasion without any return of symptoms. I saw a functional medicine doctor a year ago because I suspected the root cause of my IC was my bowel issues , so it was decided that we would treat my gut and if that got better, my IC should improve and it did. Might be worth trying to figure out what your root cause might be, we're all different, that's why some people have success with one approach and someone else needs something else, some people can get away without dieting so much, others can't seem to eat anything without pain. Yeast and fungal infections seem to play a big role for some people, a lot of people with IC test positive for Lyme disease and co-infections and parasites etc. Just something to think about..

                        Comment


                        • #13
                          Re: Two years healing, remission for five years now, what worked for me.

                          Another offer of hope is that research has started in Australia into IC by a very reputable professor, Barry Marshall, who is a Nobel Laureate of medicine, and his team (google him, he's done great things). If you take a look at the website, ic-bps.com, an email was sent out only about 3 weeks ago advising the research was about to begin. It's starting on healthy subjects who don't have IC or bladder problems but hey, it's a start. You can also play a part in the research by emailing your story through to them directly or posting it on their forum (all details are on the site).

                          I'm currently in the third trimester of my second pregnancy and my IC has been in remission for 2 months. I know after all the hormones wear off, my IC will come back with a vengeance (this is what happened after my first pregnancy), but for me, knowing this research is happening offers me huge hope. IC gets me down massively and I find it hard to accept too, especially after you have the good luck of going into remission and getting a taste of what it feels like to be normal again. I was in daily, constant pain for 18 months after my 1st pregnancy but it eventually died down. It was still ever present until this remission but it was a lot more bearable than those 18 months. Unfortunately this is the card we've been dealt and we have to do whatever we can to get through it because now, more than ever, I'm sure that one day there will be a cure.

                          Comment


                          • #14
                            Re: Two years healing, remission for five years now, what worked for me.

                            I'm hearing great things about Desert Aloe extra strength capsules, have ordered them we will see! Good luck
                            Have had symptoms since March 2010
                            Have tried: Ditropan, Detrol, Aloe Vera, Uribel, Myrbetriq, Vesicare, others I can't remember
                            Diagnosed Jan 2016, with cysto/hydro,(no hunners) worked great for 4 months, another hydro in July
                            I just started drinking Aloe again and taking hemp oil which is getting great reviews!!
                            25mg hydroxyzine before bed,
                            25(was on 50) mg Elavil before bed, now on 400mg Elmiron, since about Sept.
                            valium suppositories when needed
                            Ambien before bed
                            for a CURE,

                            Comment


                            • #15
                              Re: Two years healing, remission for five years now, what worked for me.

                              That is so wonderful you have healed. I have had remissions too for years sometimes but the ic seems to rear it's ugly head again. When I'm "ok" i can eat and drink anything but what I'm hearing from you is that even if you feel good you should still be very diligent with the diet? I get so anxious and depressed with flares and I can't seem to pin down any triggers. So maybe it's the diet.
                              So you stick to it no matter what right? Thanks for sharing your success story.

                              Comment

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