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  • #16
    question for bdelaune re nerve stim.

    Hi ~
    You mentioned a nerve stimulator for preventing urgency. I would so be interested in that because my family and I are avid hikers and before the IC we had plans to hike Half Dome 17 miles in Yosemite. But there is no way I would last with out bathroom breaks along the way. It just devastates me that IC has robbed me of so many plearsures in life. Hiking, running, expresso, wine, sexual relations with my husband... I feel robbed. But I am not going to let it take everthing away and as a matter of fact I am going to fight for everything back.
    Anyway, if wearing a stimulator can prevent the urgency/frequency then I want it.
    Thanks for your reply.
    Danica
    Peace
    Danica


    Stopped taking Elmiron for the time being-- could not tolerate side effects

    ADARAX 25mg at night and at times morning
    Calcium mag citrate w/ vit.D
    Prelief 8 to 10 a day
    Cystoprotek 4 a day
    MSM

    ~God's mercy and grace are infinite~

    Comment


    • #17
      It's not unusual for someone who is newly diagnosed to try desperately to find something --- anything --- that will promise a real cure. Unfortunately, that's why the "quacks" find so many of us to be willing to spend our money on any and every thing someone recommends. I know I did at first.

      But I found that what works best for me is to stay on my IC diet and work with my physician on treatment options. If someone recommends a "cure" to me, my response is now "Show me the evidence." Testimonials just don't convince me --- I could write 100 testimonials in a day and that wouldn't make them evidence.

      One thing I would like to stress is that most people with IC do find treatment options that allow us to feel good most of the time. It can take a while and some effort on our part (such as keeping a food diary), but it's well worth it over the long haul.

      Sending warm encouraging hugs,
      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


      • #18
        I know we should never give up hope but I do believe there is no cure for IC right now. I do believe the things that are done is to only help us with the pain and to try to give us comfort.

        I do believe that because there is more insight now on IC, that maybe with a miracle that somehow they can find out what is causing it and find a cure.

        What is so hard each one of us have a different connection with it. There is no set rule. But there is always hope, so don't give up.

        Trishann

        Comment


        • #19
          P.S. Danica, there is a product available in the ICN Shop that just might be something that would be a huge help for you. It's called the Travel John and is perfect for hiking or long walks. When we go to the beach I stick one in my pocket --- all I need for a bathroom break is a bush, log, or sand dune to get out of sight.

          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


          • #20
            Donna, you give me hope...

            Donna~
            Oh my gosh if such a thing exists, I am ALL for it. I will look it up instantly. My biggest hope now is that we as a family will be able to continue with our plans to hike Half Dome. I am indredibly motivated to follow the IC diet to the letter and give my bladder a chance to rest. (I have seen the word "heal" used in place of the word "rest". Is there such a thing as "healing" the IC bladder?) In the mean time, I will continue with Elavil and Cystoprotek and hope for pain free days.

            Peace,
            Danica
            Peace
            Danica


            Stopped taking Elmiron for the time being-- could not tolerate side effects

            ADARAX 25mg at night and at times morning
            Calcium mag citrate w/ vit.D
            Prelief 8 to 10 a day
            Cystoprotek 4 a day
            MSM

            ~God's mercy and grace are infinite~

            Comment


            • #21
              Originally posted by L. Thomas
              My urogyn thinks IC is an underlying condition that you are born with and it becomes active after bladder tramua. That fits me prefectly.
              I tend to agree with that theory. My IC started about 4-5 months after a bad fall (fell about 2-3 feet on snowboard onto hard ice). A lot of things havn't seemed right since then.

              Medical "Issues":
              IC
              GERD
              Tachycardia(resting rate is 125-130 )
              Medicastions:
              Tramadol-as needed (IC)-50mg
              Elmiron 200mg twice a day
              Levsin .125mg 1-2 pills 4 times a day

              Comment


              • #22
                Danica, yes -- there is a treatment called neuromodulation (Interstim) that can help reduce urgency and frequency in some IC patients, but it is an implantable device that stimulates your sacral nerve. It is major surgery to have the trial and then the permanent implant -- I know because I am in the middle of doing it -- and should NOT be considered unless you have tried and exhausted all of the less invasive treatments out there first. It is NOT a quick or easy fix.

                I personally agree that the origin of IC may be different in different people. I am one of those who developed my first IC symptoms at just 8 years old, and since I was not sexually active at that point (nor was I abused), I just can't buy the sexually transmitted theory.

                I do believe that sex can increase the likelihood of true UTIs, as you mention -- that is well documented scientifically and occurs because the urethral, vaginal, and anal openings are so close together in women, and cross-contamination during sex is common. It's possible that once your partner died, your UTIs decreased in frequency simply because you were not having sex as much.

                I commend you for looking for all treatments possible, and I do understand that in the beginning it is common to feel the way you do. When diagnosed with a chronic illness, it is very, very common for people to go through the stages of grief as if they are mourning the loss of their previous "non-sick" lives. Denial, like the one you're feeling, is common -- it is indeed one of those stages of grief. You are not alone.

                Please don't let your denial or any other feelings cloud your judgement, though. Now, more than ever, you need to look at treatments through a logical, calm, and almost scientific eye -- right now, if I told you eating a worm would cure cancer, you'd tell me I was an idiot, most likely. It's the same with IC treatments -- if it sounds way too good to be true, it probably is. Donna's post about this was great
                ****
                Jen

                *Diagnosed with severe IC in 2004
                *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                **I am not a medical authority nor do I offer definitive medical advice. 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.

                Comment


                • #23
                  Hi Jen~
                  Thank You for your response. I won't rush into anything as far as the implant goes. Besides I'm positive my uro would certainly not allow me to jump to that point just yet. I guess at the age of 40 I am not willing to give up being an active individual. I miss my long runs so much...it is just too much motion for my bladder to handle. I feel like I have to pee as soon as I start the run. I'm trying new things now like the eliptical machine at the gym and it seems to be a friendlier workout then jogging. Anyway, I really appreciate all the support from every one. It is such a blessing.

                  On a side note...is that you with your pet in the picture under your name? Can you let me know how I may do that as well?
                  Thanks:-)

                  Peace.
                  Danica
                  Peace
                  Danica


                  Stopped taking Elmiron for the time being-- could not tolerate side effects

                  ADARAX 25mg at night and at times morning
                  Calcium mag citrate w/ vit.D
                  Prelief 8 to 10 a day
                  Cystoprotek 4 a day
                  MSM

                  ~God's mercy and grace are infinite~

                  Comment


                  • #24
                    Heather was a virgin and 13 when having her first IC symptoms, so it wasn't in my humble opinion an std. I do however agree that it is autoimmune. I'm trying to find a coinsidence between her anaphyliasis at 13 to a bee string and IC, both are inflammatory
                    Forget the potholes in the road, enjoy the journey
                    Heather was dx feb 1 2007
                    My daughter's med's
                    elmiron 100mg 3'xs a day
                    lexapro 5mg
                    atarax 10mg
                    prelief two tablets before bed, PRN
                    multi vitamin


                    http://mydaughterhasic.blogspot.com/

                    Comment


                    • #25
                      Um, I read the whole thing, and she goes on to say that you can also get te bacteria from your own feces(sorry, kinda gross) and other sorces. I don't know why she even says the STD thing, when there are other sources as well. I agree, a bad choice of words. I don't think she's correct in saying that bacteria is the answer for everyone, because I also believe that truly IC is in reality several conditions with similiar symptoms. However, I have read on other sites about women who acheived total remission by going that route, so it is possible. It's absolutely worth a shot.
                      About the auto-immune disorder theory-there are those who believe that your immune system has been compromised, and cannot fight off the bacteria. So if it does turn out to be that, you need to take messures to improve your immune system as well.
                      I know what it's like to be in that shock of just getting diagnosed. At 18, even after two years of pain, I couldn't quite process it. Now, 4 years later, every time I get a bad flare, I am still fillled with the same disbelief. What you are doing is great-look for alll your options! I couldn't handle doing the research or trying a new doctor, I'd just feel so overwelmed. I'm finally now taking an active role in my own health. A lot of days I feel like it is too much for me to deal with.
                      For instance, I had an app. with my relatively new doctor today, and I wanted to talk to him about several options I'd found in my research, and ask for better pain management. All week, I kept thinking there was no way he would let me get through the whole list, and what if he doesnt take my pain seriously enough. My husband told me again and again, you can't worry about that...just assert yourself, make him listen to everytihng you need to say. I was so anxious about it (due to very bad experiences with doctors in the past) I was almost shaking by the time he came iin the room. But I somehow calmly told him I had a list, and we went through it, and he took my pain seriously and with unusual sympathy for a doctor. Maybe part of it was luck, he's very nice, but I learned my lesson for sure. I let doctors bully me in thte past. Make sure you have a good doctor, but remember that you are sort of a team, and they don't always have all the answers. I have been given totally false info by doctors-research what they tell you.
                      Most importantly-demand proper pain management! There are specialists who can help you with things other than pain meds. Don't give up!
                      Kate

                      Low acid diet, no chocolate or alcohol-well, when I'm flaring
                      water awareness. I make sure I am never even a little bit dehydrated.
                      tried dmso-they are some form of medieval torture and didn't help me.
                      papaya
                      yoga


                      Have you ever taken care of a plant? You can cut off leaves, stems, branches, and the plant just keeps growing. Living things all contain the ability to heal, we are not so delicate as they tell us.

                      Comment


                      • #26
                        Please always take into mind that many people out there unfortunaly make money off of the suffering of others. IC is a very hard disease to live with and often times people will pray upon our volnerablitiy. I myself have spent countless nights searching the interent looking for a cure and being promised one if I just spend some money. Be aware that at this time there is no cure for IC according to leading experts. If there were don't ya think we all would be buying up this miracle antibiotic. Don't you find it odd that this women has the cure, but is only willing to give it to you if buy her book for $37.00. I would be interested to know if anyone on this site has actally been hepled by this book and the mysterious antibiotic. Just be careful there are too many people out there looking to make money off of our suffering, they have no conscience, and are only looking to make a quick buck off of easy pray.
                        Erin
                        PS. I too had IC as a child and I am positive that I was never molested

                        Comment


                        • #27
                          Danica, sorry i didn't respond sooner, but i just logged back on to the site. I love my stimulator, but as someone already posted, it is a major surgery. I only tried the stim b/c i had run out of other options. You have the first surgery to place a lead into your sacral disc, located near the end of your spine. (The lead is connected to a batter pack that you wear near your waist.) The lead sends electonic pulses to interfere with the messages sent from your bladder. So, while my bladder says "gotta go" as soon as it has anything in it, my brain won't get the message until the bladder is actually full. (this is the layman's explanation!) If you show a positive response, you have another surgery to implant the battery inside a butt cheeck. (My husband jokingly calls me scar-butt now...kinda like Scarface)

                          I still have sensitivities to food, but its helped a lot with frequency. I am happy i had the surgery, but my doctor would not have done the procedure if i hadn't tried a million other treatments. Keep it in the back of your mind if you don't respond to other treatments, but it really is a last-option treatment. I have already had to have surgery to replace the battery once, and will have to do it again sometime in the next 5 years.

                          I also want to re-emphasize a point someone else made. If your doctor does not take your pain or concerns seriously, find another doctor. I was lucky that my first doctor was really good (but eventually retired). I went through a few mediocre ones before i found my current doctor, who is fabulous.

                          Good luck!

                          Comment


                          • #28
                            Kate, you pretty well summed it up. Team work, you and your doctor. Getting a doctor that will help you, and help you to feel better.

                            Trishann

                            Comment


                            • #29
                              Hey Fish

                              You are wise beyond your years! Thank you for the informative posts. You brought it down to my level. It helps me to explain this crazyness.
                              Diagnosed Jan 07

                              Stopped Elmiron due to hair loss @ 4 months

                              Stopped Amitriptyline 25mg [email protected] months wt gain
                              IC Diet
                              Take 2 tablets cytroprotek daily WORKS GREAT!!!

                              "I can't adjust the wind but I can adjust the sails"

                              Mary

                              Comment


                              • #30
                                I agree that Kilmartin implying that ALL cases of IC are essentially STDs is a bit over the top, and there are many on this site that can easily disprove that theory due to their age at diagnosis or becoming symptomatic. It also struck me in reading that quote that she is obviously very opposed to men being uncircumsized...maybe it's her disdain that has either consciously or subconsciously caused her to feel so strongly about circumcision and that it is the origination of IC.

                                ~Claudia

                                "A heart is not judged by how much you love; but by how much you are loved by others."
                                ~ The Wizard of Oz

                                "If I ever go looking for my heart's desire again, I won't look any further than my own
                                back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


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