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Is their an actual list on what causes IC?

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  • Is their an actual list on what causes IC?

    Is their an actual list on what people think causes IC and a list of all the different medications and supplements people are taking? That would be very helpful. I have read so many different post but it would be a lot easier to have it all on one page(s) for everyone. It needs to be more comprehensive than what is in the IC handbook. Their are so many other treatments people are using and getting great results and some are even getting healed. Their are also other test people are doing and actually finding out what is causing their IC. I could have Lyme disease. I just read about Lyme last week here on the IC Network. If I could have went staright to this list I could have had the blood test done just to rule it out.

    For instance:
    Supplements:
    - MSM - known to help supplements absorb better into the body. Helps with inflamation.
    - Guta Kola - Ehances connective tissue repair. Reduces the inflammatory phase of scar tissue (i.e. to help with IC ulcers).
    - Probiotics - ...
    - Aloe Vera - ...
    - Glucosamine - ...
    - Ginger root - ...
    Possible Causes:
    - Lyme Disease (bacterial infection of tics known to mimc IC symptoms.)
    - Lupus
    - Bacterial Infection( certain type of infections are being discovered under broth cultures which are being identified as the cause of IC in certain people.)
    - Good bacteria destoyed from anti-biotics ....
    - Hormonal imbalances .....
    - Genetic
    Medications
    Elimiron
    Elavil
    Neurotin
    Hydroxine
    AZO
    Lunesta
    DMSO
    [SIZE="1"][SIZE="2"]Please send all private messages to [email protected]. I do not check my ICN mailbox much.
    Symptoms:
    24/7 Bladder Pain, Mild Urgency and Frequency. Always tired and fatigued. Trouble sleeping due to bladder pain and trips to bathroom.
    Allergies/Sensitivities:
    Alcohol(big time!), Soft drinks. Foods dont bother me.
    Current Supplements: None presently
    Conventional medications!!!!!: Nuerontin, Hydroxyzine, Elmiron, Tramadol
    Tried many other medications... will list later

  • #2
    The ICA does have a massive list of treatments people are using. The only trouble with it is that some treatments are much more successful than others, so that list in & of itself is imperfect, in that it's better for people to start out using the most successful treatments first...

    The other thing is that there is no definitive cause for IC. While some things, like Lyme or Lupus, are worth checking out, it is easy to spend thousands of dollars testing for everything under the sun, to end up with nothing more than the IC diagnosis started out with.

    That said, I think the Patient Handbook linked at the top of the page is pretty much the easiest & most comprehensive resource out there for us...
    Kadi

    -------------------------------------------------------------
    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.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

    Comment


    • #3
      I agree...if you're not finding what you're looking for here I would check the ICA's page. I also get their free newsletter. I've never seen a comprehensive list like you are talking about, at least not that detailed, but it's worth checking out the site. The way Jill has broken the ICN up into mild, moderate, severe, extreme/complicated cases should help you figure out things that could help you. As for causes of IC, that is a topic that is impossible to find a good answer on. There are a lot of research papers on this web site, as well as on the ICA.

      Not the answer you were looking for, but hope it helps some.
      *IC-- Summer 2004; PFD--October 2005
      *Fibro--Fall 2000; CFS-- Fall 2000
      *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

      Total Abdominal Hysterectomy--adenomyosis--9\08

      04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

      Comment


      • #4
        Actually, nobody knows what causes IC. What I believe, and that's only my own opinion, is that I already had the potential for IC, but the trauma of a major abdominal surgery (which I now refer to as the abominable surgery) was the final straw that turned loose the IC.

        As to treatments and the examples of MSM, etc. -- in most instances, there is not any proof that over the counter supplements are effective, since no clinical studies have been done.

        I have known of people with IC who have had remissions of as long as five years --- and I read a statement of one who after two years without symptoms pronounced herself "healed." I have gone as long as two years with very little problem, but when the symptoms returned full bore I was very glad I hadn't convinced myself I was cured.

        When I was first diagnosed I tried any and every remedy anybody suggested and the only effect it had was that my wallet was slimmer and my medicine cabinet full of what I learned was basically garbage as far as treating my IC.

        There is a book I recommend highly for providing a basic understanding of IC. Dr. Robert Moldwin's, "The Interstitial Cystitis Survival Guide" is an excellent resource. My IC was diagnosed in 1975 and I have done a lot of research and study --- and when the Moldwin book came out, I found I still had a lot to learn.

        Sending healing thoughts,
        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


        • #5
          I'm not sure I have seen a list exactly like the one you are describing, but I do know where you can find something quite similiar.

          There is this awesome website called RemedyFind.com, and their interstitial cystitis section has a list of over 300 treatments for IC! That's right, over three hundred. I counted

          Here is a link to the list: http://www.remedyfind.com/HealthConditions/46/?All=1

          One of the cool things about the site is that you can tell about how popular the treatment you are looking at is by how many people have rated it. For example, one of the meds I've rated, Elmiron, has 77 ratings. Another one I've rated, Levbid, has only 3. While this is a rough way of estimating how popular an IC treatment is, you can basically tell how mainstream a treatment is by how many people rate it.

          The ratings themselves, though, are probably the best feature. People make an account (it's free), then find a med that they have tried for their IC and give it a rating. You rate it on five different points: effectiveness, lack of side effects, ease of use, long-term effectiveness, and cost effectiveness. Ratings tend to be more balanced that way.

          I have links to the treatments that I've rated on my sig. I don't mean to sound like an infomercial, but I really love this website, and I think you might like it as well.


          Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
          Current IC treatments: menstrual suppression
          Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
          As-needed treatments for other conditions: Klonopin, Ambien

          Comment


          • #6
            Green the fish,

            That is a pretty cool site. It would be nice if more people contributed to the ratings
            I guess ICers will have to keep searching the forum to find their remedies and test to have done to maybe find out a solution to their IC.
            If I ever have time or get time I will get a list together. I am a business owner and have no time to myself. My only hobby is searching the internet when I get time and just resting and watching TV. I doubt Ill ever have time or if it would ever help other but I play lottery so maybe I will win and just quit work! Joke!
            [SIZE="1"][SIZE="2"]Please send all private messages to [email protected]. I do not check my ICN mailbox much.
            Symptoms:
            24/7 Bladder Pain, Mild Urgency and Frequency. Always tired and fatigued. Trouble sleeping due to bladder pain and trips to bathroom.
            Allergies/Sensitivities:
            Alcohol(big time!), Soft drinks. Foods dont bother me.
            Current Supplements: None presently
            Conventional medications!!!!!: Nuerontin, Hydroxyzine, Elmiron, Tramadol
            Tried many other medications... will list later

            Comment


            • #7
              Dean, also a good way to find out about treatments is to google IC in medscape. There are sooo many articles to read about studies done on IC. All kinds of studies done on Elmiron, Atarax, Elavil, etc. that show various effectiveness rates. One set of studies, done on Cyclosporine-A, helped me convince my doctor to let me try the drug despite the risks. It's given me remission, but I went through a scare with my kidneys recently (they are almost back to normal now.)

              Blessings,
              Lori

              Comment


              • #8
                Nerve damage

                Missing from your list is nerve damage. This is the reason for a lot of pain from VV, PFD, and IC. Nerves become damaged from some trauma which could be disease (Shingles, herpes, Lyme ect.), from trauma such as surgery or accident, or just from an accumulation of histamines due to food allergies or other body inflammations. The bladder is a pool of everything you ingest from food or medicine, and just think of some the caustic things people put in their bladders over the years, no wonder at some point the nerves go nuts, and the lining errodes. I know people who drink 6 Cokes a day.
                Sammi

                Sammi

                Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                Diagnosis: IC, PFD (both in remission)

                Comment


                • #9
                  I had what is called rapid onset of IC. It started after extensive pelvic surgery. My urogynecologist thinks IC is a condition you are born with and it manifest itself after bladder trauma. It did in my case.

                  He also agrees that it is a lifetime condition and there is no cure, only effective treatment. He also believes that a high % of ICers are food sensitive.. I'm one of the lucky ones. Food doesn't bother me.

                  He has reassured me that if my treatment stops working that he will keep working...he said he had lots of tricks that I haven't used.
                  Last edited by L. Thomas; 02-17-2007, 09:29 PM.
                  TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                  My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                  Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                  Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                  I post to encourage and offer total support for rescue instillations.
                  Find me on facebook: L. Clark Thomas
                  Louann

                  Comment


                  • #10
                    thats exactly what happened to me,i recently had 2 different abdominal surgeries,and right after the second i kept going back complaining of all my symptoms,i didn't understand why i had all these problems after surgery.my doc at first said that i just needed time to recover and i would be fine.after a while he seen things weren't right and thats when they decided to test me for ic.i also had only 1 uti before all of this.

                    Comment


                    • #11
                      Nerves

                      That is precisely my point; you had a trauma, pelvic surgery, nerves were damaged or impinged, blood flow then gets cut off and the next thing you know you have IC, IBS, Fibromyaligia or some other problem. You probably also have pelvic floor disorder as well because if you have nerve damage from the surgery, your pelvic floor will most probably be involved also.
                      There are some cases of IC in children, but I think most IC is related not to being born with it, but a set of traumas what ever they may be that set up inflammations and then disease.
                      Sammi

                      Sammi

                      Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                      Diagnosis: IC, PFD (both in remission)

                      Comment


                      • #12
                        I think...

                        ...I feel like my IC was caused by my holding out on going to the bathroom right when I needed to. I still will find myself guilty of this. Fortunately, urgency (knock on wood) isn't a problem for me...even on a strong diuretic!!! So, I guess my bladder is pretty strong or big or something?!? I can always remember growing up and my Mom telling me to go potty and I'd always say I didn't have to, and hold it as long as I needed to. In school, I went before school and after school...never had to during (rarely at least).

                        So, I think it was keeping all of these toxins in my bladder for extended periods of time, letting it seep into the lining of the bladder and ulcerate, etc. For many years, from high school days, I thought I was getting UTI after UTI...then YEARS later to find out why the cranberry juice felt like eating holes thru me rather than healing me...cause it was IC, not a uti. Anyway, that's just why I feel I got my IC.

                        I'm sure the 3 lapos, 2 c-sections, and total hysterectomy didn't help either.
                        Luanne

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