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  1. #1
    ICN Member NewLife's Avatar
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    Aug 2008
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    Lining rebuilding vs. bladder coating

    Hi everyone! I have a question on how supplements like Cystoprotek, Aloe Vera and even meds like Elmiron work. Do they just coat the bladder or do they provide the nutrients needed by the body to actually rebuild the lining? From what I read in Elmiron's brochure, it sounds like Elmiron just coats the bladder; otherwise, why would people have to remain on it indefinitely? It it the same for Cystoprotek and Aloe?

    The reason I ask is because I'm taking other althernative stuff that I believe will help rebuild my lining but I'm concerned that those nutrients will not be able to get deep into bladder tissues when they are excreted w/urine if the bladder is coated. At this time, I seem to have my symptoms under control, so I'm looking for something that actually repairs the damage rather than symptom relief.

    Any thoughts, anyone? Thanks in advance!
    Let's help move IC research along! Do you flare when taking a prescription or non-prescription drug that may be unrelated to IC? Suspect a link between how your IC started and the medications you were taking at the time? The FDA wants to know about this so that they can investigate any possible links and make medications safer. Report IC to the FDA as a possible side effect: https://www.accessdata.fda.gov/scrip...tch-online.htm


    I am on the path toward remission!
    Had symptoms since 11/2007
    Diagnosed with Ulcerative IC on 8/6/2008 (age 25) via an office cytoscopy

    My symptoms:
    Urgency, Discomfort, Nocturia, 2 Hunner's ulcers visible without bladder distention, Occasional pinching pain that goes away quickly

    My flare triggers:
    Fermented foods and stress

    IC supplements and lifestyle adjustments:
    IC diet w/addl restrictions (high protein, low yeast/no fruit, low histamine)
    Oil pulling with coconut oil
    Candida cleanse with a Solaray product and diet
    Cystoprotek
    Sea buckthorn oil - 1 tbsp daily - this product helps heal wounds faster
    Magnesium - helps the body produce hyaluronic acid, which is responsible for connective tissue health
    Flax seed oil
    Organic Manuka Honey - 2 tsp daily - heals wounds and has anti-bacterial properties
    Melatonin as a sleep aid for evening flares
    Stress management & positive affirmations
    Bladder training
    Cardio workouts 2-4x weekly
    Food, exercise, medication and sleep pattern diary to identify flare triggers

    Other things I tried:
    Elmiron - took it for a month without side effects but decided to try natural treatments first
    Elavil - drowsiness & heart palpitations
    Urine pH testing - mine was in the range of 5.5 to 6.25; did not see any correlation w/flares
    IgG Allergy testing by Immuno Labs - found food sensitivities

    On my to-do list:
    Get tested for vitamin/mineral defficiencies
    Try passionflower extract for stress management


  2. #2
    Forum Manager ICNDonna's Avatar
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    I think of the treatments as being like a bandaid. They help protect the bladder lining by building a temporary lining --- but when we stop taking them, they don't usually continue to help.

    Donna
    Have you checked the ICN Shop?
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    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/patient-r...on/#icfoodlist

    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    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.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  3. #3
    ICN Member an0bgobeloba's Avatar
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    i'm not sure exactly how those meds work...but even the elmiron web site said that they don't really know how elmiron works they just believe it works by creating an artificial bladder lining. the artificial lining allows your bladder to heal and helps to prevent further damage. aloe vera though is very helpful in speeding up healing. i'm also taking msm which is supposed to help with healing too. good luck on your research...be sure to come back and fill us all in
    Current: -pelvic floor therapy, -weekly uracyst instills

  4. #4
    ICN Member
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    [QUOTE=an0bgobeloba;451773]i'm not sure exactly how those meds work...but even the elmiron web site said that they don't really know how elmiron works they just believe it works by creating an artificial bladder lining. the artificial lining allows your bladder to heal and helps to prevent further damage. aloe vera though is very helpful in speeding up healing. i'm also taking msm which is supposed to help with healing too. good luck on your research...be sure to come back and fill us all in [/QUOTE
    Newlife:
    I would like to believe the same about Elmiron...that it creates an environmnent in which SOME bladders can heal and also considering the relatively long time that Elmiron is reported to become effective in SOME paitients, that that would give other treatments bladder healing properite's enough time to take effect, hopefully in a positive way. Best wishes to you and please take this post as JMHO
    Symptoms started Nov 2003.
    Diagnosed Nov 2004.
    In remission since Aug 2009.

    Favorite quote: "Moderation kills." ~ Dr Caldwell Esselstyn, Jr.


  5. #5
    ICN Member NewLife's Avatar
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    Hi everyone! Thanks for your opinions. Isn't it scary that even the manufacturer doesn't know how Elmiron works?

    Sounds like the consensus is that the bladder coating effect is more likely. Oh, well.
    Let's help move IC research along! Do you flare when taking a prescription or non-prescription drug that may be unrelated to IC? Suspect a link between how your IC started and the medications you were taking at the time? The FDA wants to know about this so that they can investigate any possible links and make medications safer. Report IC to the FDA as a possible side effect: https://www.accessdata.fda.gov/scrip...tch-online.htm


    I am on the path toward remission!
    Had symptoms since 11/2007
    Diagnosed with Ulcerative IC on 8/6/2008 (age 25) via an office cytoscopy

    My symptoms:
    Urgency, Discomfort, Nocturia, 2 Hunner's ulcers visible without bladder distention, Occasional pinching pain that goes away quickly

    My flare triggers:
    Fermented foods and stress

    IC supplements and lifestyle adjustments:
    IC diet w/addl restrictions (high protein, low yeast/no fruit, low histamine)
    Oil pulling with coconut oil
    Candida cleanse with a Solaray product and diet
    Cystoprotek
    Sea buckthorn oil - 1 tbsp daily - this product helps heal wounds faster
    Magnesium - helps the body produce hyaluronic acid, which is responsible for connective tissue health
    Flax seed oil
    Organic Manuka Honey - 2 tsp daily - heals wounds and has anti-bacterial properties
    Melatonin as a sleep aid for evening flares
    Stress management & positive affirmations
    Bladder training
    Cardio workouts 2-4x weekly
    Food, exercise, medication and sleep pattern diary to identify flare triggers

    Other things I tried:
    Elmiron - took it for a month without side effects but decided to try natural treatments first
    Elavil - drowsiness & heart palpitations
    Urine pH testing - mine was in the range of 5.5 to 6.25; did not see any correlation w/flares
    IgG Allergy testing by Immuno Labs - found food sensitivities

    On my to-do list:
    Get tested for vitamin/mineral defficiencies
    Try passionflower extract for stress management


  6. #6
    ICN Member
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    Dec 2007
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    British Columbia, Canada
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    hey there

    yeah most scientists even don't know how a lot of meds work....
    they just know if it works or not when they do drug trials....
    it is scary in a way but in another way if it can get me outta the house for more than a couple hours well i don't care....i will take it anyway....
    thats my thought on it....and also with natural stuff too....they just know it has this effect but not really sure why they work....and also why things don't work for some people....
    it is confusing to figure out what is good or not....
    take care
    I am a cat lover----wouldn't be here without em

    been having a bad time so now trying meds to help the situation but its an uphill battle

    One day we will all have relief from pain....i do believe that but it doesn't come fast enough....

  7. #7
    ICN Member futurehope's Avatar
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    Quote Originally Posted by NewLife View Post
    Hi everyone! I have a question on how supplements like Cystoprotek, Aloe Vera and even meds like Elmiron work. Do they just coat the bladder or do they provide the nutrients needed by the body to actually rebuild the lining? From what I read in Elmiron's brochure, it sounds like Elmiron just coats the bladder; otherwise, why would people have to remain on it indefinitely? It it the same for Cystoprotek and Aloe?

    The reason I ask is because I'm taking other althernative stuff that I believe will help rebuild my lining but I'm concerned that those nutrients will not be able to get deep into bladder tissues when they are excreted w/urine if the bladder is coated. At this time, I seem to have my symptoms under control, so I'm looking for something that actually repairs the damage rather than symptom relief.

    Any thoughts, anyone? Thanks in advance!
    Very good question. Why not try your alternative therapies, and leave the Elmiron out of the picture for now? See how it goes. It's working for me. See below.

    I hope all works out well for you.
    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)

  8. #8
    ICN Member
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    691

    ester c

    future hope....i see that you are taking ester c....I just bought a bottle and was nervous about taking one a day to combat colds/flus as the winter cold season is upon us.
    have you ever had an issue with the ester c?
    thank you.
    peace
    Last edited by bluetou; 11-13-2008 at 09:32 AM.

  9. #9
    ICN Member
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    I have heard about MSM and Glucosamine. I took some for a week and wondered if it cause me to flare. Has anyone flared from these?

  10. #10
    ICN Member futurehope's Avatar
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    Quote Originally Posted by bluetou View Post
    future hope....i see that you are taking ester c....I just bought a bottle and was nervous about taking one a day to combat colds/flus as the winter cold season is upon us.
    have you ever had an issue with the ester c?
    thank you.
    peace
    It may cause me a bit of burning (the Ester C), but......
    I was severely deficient from limitations to my diet (the IC diet). I KNOW I was deficient because I could tell how much better I felt (in general), after taking the Ester-C. It's like I had scurvy or something.

    So I plan on continuing the pill.

    I cannot tell you what to do. I just go by my reason which tells me that a deficiency of anything cannot be good for my health.

    Best wishes on your healing journey!
    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)

  11. #11
    ICN Member futurehope's Avatar
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    Quote Originally Posted by loraleena View Post
    I have heard about MSM and Glucosamine. I took some for a week and wondered if it cause me to flare. Has anyone flared from these?
    I know that for me, the glucosamine/MSM must be the CVS brand without chondroitin in it. I had tried the GNC brand, and they hurt me.

    Everyone is different. Only you will be able to tell if something is wrong for you or not.
    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)

  12. #12
    ICN Member curlycue's Avatar
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    Elmiron

    I have used Elmiroin on and off for the past 11 yrs and let me tell you it works. My personal opionion is that I dont care how it works. I care about how I feel and my bladder feels and it feels great with Elmiron. It gave me my life back. I am now on Heparin,sodium barb,lidociane instills and they work great as well. Lowell Parson my uro know what he is doing when it comes to IC. Good Luck ladies.
    Blessings,
    Ruth

  13. #13
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    Hello. It may be a coincidence but since I have been on Elmiron for two years my MS has greatly improved! Very rare do I fall down or have "rubber"legs. My MS is mild anyway but still I had some very bad falls and exhaustion. Even my brain would not work as normal for short spells. People would speak to me and as hard as I tried I couldn't understand what they were saying. All these problems are very much relieved. I have no idea what to do with this information. I doubt a specialist in the MS field would believe it. Anyone else with both MS & IC on this site experienced the same results? Blessings to all. Ziggy

  14. #14
    ICN Member
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    Quote Originally Posted by futurehope View Post
    I know that for me, the glucosamine/MSM must be the CVS brand without chondroitin in it. I had tried the GNC brand, and they hurt me.

    Everyone is different. Only you will be able to tell if something is wrong for you or not.
    I bought the msm and glucosamine seperately - no chondroitin. I don't think it was those. I was flaring before and am stll flaring after I stopped. Did they help you? How long?

  15. #15
    ICN Member futurehope's Avatar
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    Glucosamine/MSM

    Quote Originally Posted by loraleena View Post
    I bought the msm and glucosamine seperately - no chondroitin. I don't think it was those. I was flaring before and am stll flaring after I stopped. Did they help you? How long?
    I think my pills have 500mg/500mg of each substance. I take one with each meal. I believe that these pills along with my Hydroxyzine HCL (25 mg at night), are what has brought me to where I am today. It didn't take more than 1 - 2 weeks to notice a difference.

    I have nothing against anyone using Elmiron or anything else that works, and I do not want people to do what I do. I know nothing more than what I've read on here or heard from doctors.

    I have come to my own ideas via reading this forum and via personal experience with hair loss and stomach upset (from Elmiron), and consequently decided on this course of action. My IC doctor is okay with this. He's happy that I've achieved what I have.

    Again, you will have to decide what you want. I cannot recommend anything.
    I do wish everyone the best. Really, I do.
    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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