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

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  • ICNDonna
    replied
    Originally posted by smurph99 View Post
    Your story is almost exactly my experience. I've pretty much been in remission for 4 years with an occasional mild irritation and I take baking soda with water once and it goes away. I am still taking Cystoprotek, a prelief if I have coffee and hydroxyzine at night. Are you still taking any meds as a maintenance routine or were you able to stop. Many thanks
    This is a pretty old thread so you may not see a response from the individual, but I'm sure others will respond.

    And ... I'd like to say to the IC Network.


    Donna

    Leave a comment:


  • smurph99
    replied
    Your story is almost exactly my experience. I've pretty much been in remission for 4 years with an occasional mild irritation and I take baking soda with water once and it goes away. I am still taking Cystoprotek, a prelief if I have coffee and hydroxyzine at night. Are you still taking any meds as a maintenance routine or were you able to stop. Many thanks

    Leave a comment:


  • Rope_Wrench
    replied
    Re: Two years healing, remission for five years now, what worked for me.

    Tral914, your inbox is full and I cant send you any more massages.

    Leave a comment:


  • icshorty
    replied
    Re: Two years healing, remission for five years now, what worked for me.

    Of course only try one at a time-so you can tell if it is helping. The DH Aloe site tells you everything you need to know about starting it. I imagine that Cystoprotect offers the same information online too.

    Leave a comment:


  • Juvelselos
    replied
    Re: Two years healing, remission for five years now, what worked for me.

    Hi Laura,
    Im planning to try the cystoprotek and desert aloe. Any tips when is the best time to take them? How much to take? Thank you and Im happy for you having a relief from this nasty condition.

    Leave a comment:


  • tresadrienne
    replied
    Re: Two years healing, remission for five years now, what worked for me.

    Thank you for all the tips

    Leave a comment:


  • Pillowfight
    replied
    Re: Two years healing, remission for five years now, what worked for me.

    Originally posted by purpletomorrow View Post
    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.
    I was really helped by this on my first round of IC. In fact I'm pretty sure that's what finally pushed me into remission. I was following the diet and doing all the other things you're supposed to do, but nothing really moved the needle towards complete remission until I went on Remeron. It's too bad it makes you a hungry hungry hippo but that's from the antihistamine properties, which messed up bladders usually love. So you kind of have to decide which is worse...the misery of maybe gaining some weight vs. the misery your bladder is causing.

    Am about to give it another shot; would love to hear more input/experiences on Mirtazapine.

    Leave a comment:


  • annmaco
    replied
    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.

    Leave a comment:


  • sarah57
    replied
    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

    Leave a comment:


  • lak78
    replied
    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.

    Leave a comment:


  • Helen B
    replied
    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..

    Leave a comment:


  • _Laura_W_
    replied
    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?

    Leave a comment:


  • Jamie123abc
    replied
    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!

    Leave a comment:


  • MT712
    replied
    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.

    Leave a comment:


  • Mothergoose
    replied
    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.

    Leave a comment:

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