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  • rshell84
    replied
    Re: What's In Your Instill?

    [QUOTE=Amychristina;683106]@ Rshell84- I can completely relate to you.

    I've tried so many different supplements, med's , etc and for each one that I try, I get very impatient and if I don't see results in a couple of weeks I'm off trying something new!

    I was very bad like that the first year of this condition.
    I was also very stuck on finding the ROOT CAUSE of the issue.
    Was it a candida overgrowth? Was it a latent bacterial infection? Should I send my urine off for broth culturing?
    I drove myself nuts because in my mind I thought that if I knew the CAUSE of this problem....it would be easier to find the "cure"...or at least something that would heal it.

    But I've given up on tracking down the cause, I could spend the rest of my life trying to get that answer....it's exhausting and there are far too many variables that could play a part in what got me to this state of health with my bladder that I'll probably never really know for sure what the ultimate "culprit" was that did it in.
    I think it was a combination of things (years of chronic aspartame use in soft drinks, repeat UTI's and Yeast infections)
    For now I just want my life back and symptom relief!

    Unfortunately our poor little bladders DO take time to heal and see improvement with these various treatments.
    The way I try to look at it is: The bladder is under constant assault from a noxious, acidic kind of environment (the urine)....that it is going to take twice as long as probably most other ailments because it's hard for the lining of our bladders to heal up fast enough with all the urine that's constantly filling up in there and the exposure to that kind of environment.
    I can understand why it takes so long to heal and feel better.
    When I think of it that way...I become a bit more patient.

    As to your question about hormones....well I turn 50 yrs old tomorrow

    but I started having perimenopausal symptoms 2 years ago....night sweats, cranky and crying...forgetful...mood swings,
    and the bladder issue started right before all that (interesting timing, right?).
    I had bloodwork done for my hormones and my levels were horribly low on EVERYTHING.

    I go to a BioIdentical hormone doctor now and get the "pellet" therapy...where they insert a pellet the size of a grain of rice in the back of the hip...and I'm all set hormone-wise for about 4 months until I need a "refill"...lol.

    But I thank God for the hormones or I'd be a complete mess at this point.
    Unfortunately getting all balanced with estrogen/progesterone (and even Testesterone, us ladies need that too!)
    it still hasn't helped my bladder at all.
    So I'm not so sure the hormones are a major contributor to my issue. I don't think so.

    In any case...I DO want to report that my bladder felt a little bit calmer today.
    Nothing dramatic, but I did feel a bit less "urgency" with my bladder today.
    So I'll take that as a good sign of things to come.

    I'm keeping fingers crossed here,
    and I'll let you know how my next treatments go.
    Thank you so much for asking and for your interest.

    I hope you have a great weekend and a wonderful Holiday if we don't speak before then.

    Amy Bhormones

    Amy,
    Well Happy (early) birthday to you!!!! And I am so glad to hear your bladder is feeling a little better today. Wahoo! Maybe with continued use you will just keep getting better and better.
    I have considered bio identical hormones because my progesterone has tested low, but for now I think I'm going to just give my body a chance to regulate out. (I'm 31).
    Yes I was the same. Trying to find the root cause thinking I was going to figure out the cure to IC overnight basically lol. I am slowly letting go of that. Like you said, it is exhausting and it is best to look forward and figure out how to get relief rather than looking back and dissecting every little event in our lives that may have caused this. I actually found out yesterday that my maternal Grandmother has had IC and so does one of my Great Aunts! And my older sister is showing signs so now I feel I guess a little less confused wondering what I did to cause this and I can now say OK maybe this is something in genetics in my case?
    Anyways hope you have a wonderful birthday, weekend and holiday as well!

    Leave a comment:


  • Amychristina
    replied
    Re: What's In Your Instill?

    Originally posted by rshell84 View Post
    Hi Amy!
    Yes I have heard some having steriods put in theirs I think it's called solu cortef or something. And I think the extra ingredient in Itapilot is an antibiotic (gentamicin).
    I have only been "officially" diagnosed with IC for a little while, although I have always had weird bladder issues, but basically this year is when I have been experimenting with different treatments. And like you said, a lot of things take time, so to be fair, I'm sure there is some things I've tried that I didn't give enough time to work. I have actually tried more stuff than I even have listed in my signature, but since I didn't give them a fair trial I just didn't bother listing them.
    I feel like the ones that have helped the most are the amitriptyline & either the Cystoprotek or Elmiron (I'm still trying to figure out which one). I do feel confident that the Cystoprotek helps to some degree though. I currently take 3-4 pills a day, but recently tried to wean off of it and I started to flare a little. I went back up to 3-4 pills and started to feel better. But I flare with hormones as well so it is a bit confusing still.
    You mentioned that you are taking estrogen. How old are you? Have you had your hormones tested? I find the hormone and IC connection with some, probably a lot of us ICers very interesting. Wish there was more studying going on with this particular aspect. I was on birth control pills for a long time but now can not tolerate them at all.
    I have also tried stuff with my diet besides the IC diet such as the Candida diet and the Paleo Autoimmune Protocol. Both were very challenging and didn't seem to make a whole lot of difference with my symptoms compared to the IC diet. I have also tried things like eliminating gluten, nuts, and dairy with not much change.
    I think the other two non medication things that have helped me is stress elimination and physical therapy for my pelvic floor. During flares vaginal valium and Uribel help the most.
    Thanks for letting me know how the first session went and for providing me with those tips and information. I appreciate it. I hope the instills get you to where you want to be. Please keep this thread updated on your progress
    @ Rshell84- I can completely relate to you.

    I've tried so many different supplements, med's , etc and for each one that I try, I get very impatient and if I don't see results in a couple of weeks I'm off trying something new!

    I was very bad like that the first year of this condition.
    I was also very stuck on finding the ROOT CAUSE of the issue.
    Was it a candida overgrowth? Was it a latent bacterial infection? Should I send my urine off for broth culturing?
    I drove myself nuts because in my mind I thought that if I knew the CAUSE of this problem....it would be easier to find the "cure"...or at least something that would heal it.

    But I've given up on tracking down the cause, I could spend the rest of my life trying to get that answer....it's exhausting and there are far too many variables that could play a part in what got me to this state of health with my bladder that I'll probably never really know for sure what the ultimate "culprit" was that did it in.
    I think it was a combination of things (years of chronic aspartame use in soft drinks, repeat UTI's and Yeast infections)
    For now I just want my life back and symptom relief!

    Unfortunately our poor little bladders DO take time to heal and see improvement with these various treatments.
    The way I try to look at it is: The bladder is under constant assault from a noxious, acidic kind of environment (the urine)....that it is going to take twice as long as probably most other ailments because it's hard for the lining of our bladders to heal up fast enough with all the urine that's constantly filling up in there and the exposure to that kind of environment.
    I can understand why it takes so long to heal and feel better.
    When I think of it that way...I become a bit more patient.

    As to your question about hormones....well I turn 50 yrs old tomorrow

    but I started having perimenopausal symptoms 2 years ago....night sweats, cranky and crying...forgetful...mood swings,
    and the bladder issue started right before all that (interesting timing, right?).
    I had bloodwork done for my hormones and my levels were horribly low on EVERYTHING.

    I go to a BioIdentical hormone doctor now and get the "pellet" therapy...where they insert a pellet the size of a grain of rice in the back of the hip...and I'm all set hormone-wise for about 4 months until I need a "refill"...lol.

    But I thank God for the hormones or I'd be a complete mess at this point.
    Unfortunately getting all balanced with estrogen/progesterone (and even Testesterone, us ladies need that too!)
    it still hasn't helped my bladder at all.
    So I'm not so sure the hormones are a major contributor to my issue. I don't think so.

    In any case...I DO want to report that my bladder felt a little bit calmer today.
    Nothing dramatic, but I did feel a bit less "urgency" with my bladder today.
    So I'll take that as a good sign of things to come.

    I'm keeping fingers crossed here,
    and I'll let you know how my next treatments go.
    Thank you so much for asking and for your interest.

    I hope you have a great weekend and a wonderful Holiday if we don't speak before then.

    Amy B

    Leave a comment:


  • rshell84
    replied
    Re: What's In Your Instill?

    Originally posted by Amychristina View Post
    @ RShell84 Well I had my instill this afternoon,

    It was somewhat uncomfortable because the first nurse who came in to take care of me couldn't even find my urethra!
    So there was quite a bit of poking and prodding going on.
    She actually had to call another nurse in , and SHE was able to get the catheter in.
    geesh..
    I was only able to hold the solution in for about 20 minutes...
    but all is fine (just a little soreness from the catheter)
    I made them give me an antibiotic before I left just to safeguard against getting a UTI (that's the last thing I need)

    So we'll see how it goes,
    I'm due to go back once each week for the next 5 weeks for a series of 6 total.

    If you Google "Hep Lido A" you'll find the pharmaceutical company that distributes the formula (yes, this is the Parson's)
    and this pharmaceutical company actually has it set up so you can purchase directly from them (with a Dr.'s Rx of course)
    and they'll mail you the solution directly to your home if you want.
    I think this is a great option for anyone who's doing home instills.
    I just thought I'd mention it in case you're interested in trying yourself.

    My only suggestion for anyone going in for an instillation like I did today is to make sure they use the smallest catheter size possible....also make sure they give you an antibiotic as a precaution from UTI...and be sure they use lidocaine jelly on the catheter.

    I've had IC for 3 years and it's really wearing me down...I've tried everything I can "Holistically".
    I've done the Candida diet...the Raw Food diet....seen a Chinese herbalist, a Chiropractor, a pelvic floor P.T...
    a Number of Naturopaths...but none of those options helped my bladder at all.

    The only thing that's given me any slight improvement in the past was taking the Cystoprotek.
    I was taking 6 capsules a day back at the begining of the year, and within 3 months I went from peeing every 30 to 40 minutes....to peeing every 2 hours.
    It was wonderful!!!
    Then I cut down to only 4 pills a day and ALL the frequency came back.
    I got annoyed and just stopped taking the Cystoprotek because I figured it was too much money to shell out monthly for 6 capsules a day * I was having to order TWO bottles a month= $100 a month.

    But now I'm so desperate for relief I'm back to taking the 6 Cystoprotek daily, along with Prelief with every meal...
    and along with the bladder instills....I'm also using a vaginal estrogen gel from a compounding pharmacy that acutally makes the estrogen cream in a base of Aloe Vera from the same folks at "Desert Harvest"....so I'm hoping that will help things out a bit too.
    But of course you know how it is with IC......it takes a few months to see any improvement with the bladder,
    so I'm trying to be patient.
    I'm even considering going back on the Hydroxyzine (Vistaril) again....even though it made me feel like a complete zombie when I was on it

    I'll definitely keep you updated on the Instills though....keeping fingers crossed for some relief soon!

    I noticed in your signature you've got a number of supplements you've tried also,
    Which medication/ treatment do you think helps you the most?
    Hi Amy!
    Yes I have heard some having steriods put in theirs I think it's called solu cortef or something. And I think the extra ingredient in Itapilot is an antibiotic (gentamicin).
    I have only been "officially" diagnosed with IC for a little while, although I have always had weird bladder issues, but basically this year is when I have been experimenting with different treatments. And like you said, a lot of things take time, so to be fair, I'm sure there is some things I've tried that I didn't give enough time to work. I have actually tried more stuff than I even have listed in my signature, but since I didn't give them a fair trial I just didn't bother listing them.
    I feel like the ones that have helped the most are the amitriptyline & either the Cystoprotek or Elmiron (I'm still trying to figure out which one). I do feel confident that the Cystoprotek helps to some degree though. I currently take 3-4 pills a day, but recently tried to wean off of it and I started to flare a little. I went back up to 3-4 pills and started to feel better. But I flare with hormones as well so it is a bit confusing still.
    You mentioned that you are taking estrogen. How old are you? Have you had your hormones tested? I find the hormone and IC connection with some, probably a lot of us ICers very interesting. Wish there was more studying going on with this particular aspect. I was on birth control pills for a long time but now can not tolerate them at all.
    I have also tried stuff with my diet besides the IC diet such as the Candida diet and the Paleo Autoimmune Protocol. Both were very challenging and didn't seem to make a whole lot of difference with my symptoms compared to the IC diet. I have also tried things like eliminating gluten, nuts, and dairy with not much change.
    I think the other two non medication things that have helped me is stress elimination and physical therapy for my pelvic floor. During flares vaginal valium and Uribel help the most.
    Thanks for letting me know how the first session went and for providing me with those tips and information. I appreciate it. I hope the instills get you to where you want to be. Please keep this thread updated on your progress

    Leave a comment:


  • Amychristina
    replied
    Re: What's In Your Instill?

    @ItaPilot....thank you for responding!
    but what is the Gentamicin? Is that another type of numbing agent, like Lidocaine?
    I don't beleive I've heard of it before.
    I've also heard people take steroids in their instills and that can help too...but I wasn't sure in what combination is best.

    Leave a comment:


  • Amychristina
    replied
    Re: What's In Your Instill?

    @ RShell84 Well I had my instill this afternoon,

    It was somewhat uncomfortable because the first nurse who came in to take care of me couldn't even find my urethra!
    So there was quite a bit of poking and prodding going on.
    She actually had to call another nurse in , and SHE was able to get the catheter in.
    geesh..
    I was only able to hold the solution in for about 20 minutes...
    but all is fine (just a little soreness from the catheter)
    I made them give me an antibiotic before I left just to safeguard against getting a UTI (that's the last thing I need)

    So we'll see how it goes,
    I'm due to go back once each week for the next 5 weeks for a series of 6 total.

    If you Google "Hep Lido A" you'll find the pharmaceutical company that distributes the formula (yes, this is the Parson's)
    and this pharmaceutical company actually has it set up so you can purchase directly from them (with a Dr.'s Rx of course)
    and they'll mail you the solution directly to your home if you want.
    I think this is a great option for anyone who's doing home instills.
    I just thought I'd mention it in case you're interested in trying yourself.

    My only suggestion for anyone going in for an instillation like I did today is to make sure they use the smallest catheter size possible....also make sure they give you an antibiotic as a precaution from UTI...and be sure they use lidocaine jelly on the catheter.

    I've had IC for 3 years and it's really wearing me down...I've tried everything I can "Holistically".
    I've done the Candida diet...the Raw Food diet....seen a Chinese herbalist, a Chiropractor, a pelvic floor P.T...
    a Number of Naturopaths...but none of those options helped my bladder at all.

    The only thing that's given me any slight improvement in the past was taking the Cystoprotek.
    I was taking 6 capsules a day back at the begining of the year, and within 3 months I went from peeing every 30 to 40 minutes....to peeing every 2 hours.
    It was wonderful!!!
    Then I cut down to only 4 pills a day and ALL the frequency came back.
    I got annoyed and just stopped taking the Cystoprotek because I figured it was too much money to shell out monthly for 6 capsules a day * I was having to order TWO bottles a month= $100 a month.

    But now I'm so desperate for relief I'm back to taking the 6 Cystoprotek daily, along with Prelief with every meal...
    and along with the bladder instills....I'm also using a vaginal estrogen gel from a compounding pharmacy that acutally makes the estrogen cream in a base of Aloe Vera from the same folks at "Desert Harvest"....so I'm hoping that will help things out a bit too.
    But of course you know how it is with IC......it takes a few months to see any improvement with the bladder,
    so I'm trying to be patient.
    I'm even considering going back on the Hydroxyzine (Vistaril) again....even though it made me feel like a complete zombie when I was on it

    I'll definitely keep you updated on the Instills though....keeping fingers crossed for some relief soon!

    I noticed in your signature you've got a number of supplements you've tried also,
    Which medication/ treatment do you think helps you the most?

    Leave a comment:


  • ltapilot
    replied
    Re: What's In Your Instill?

    My instills are 20 ml sodium bicarbonate, 20 ml Marcaine, 2 ml gentamicin, and 1 ml heparin. I use these daily at home, and they keep the pain and urgency manageable while I'm at work.

    Leave a comment:


  • rshell84
    replied
    Re: What's In Your Instill?

    Good luck with it. Please let me know how it goes. Frequency is my most bothersome symptom too. Considering instills. Sounds like you're getting the "Parson's solution" instill? Hope it helps you out. How long have you had IC?

    Leave a comment:


  • Amychristina
    replied
    Re: What's In Your Instill?

    Yes, I'm surprised no one here is sharing
    I'm going for my very first bladder instill this afternoon and I'm kind of nervous.
    I know they plan to give me the Lidocaine/Heparin/Bicarb cocktail (which I pretty much requested because I heard that combination is most helpful for frequency issues - which is my main problem).
    I'm not expecting miracles on the first round, but keeping optimistic that instills will work for me.
    I'm running out of options here.

    Leave a comment:


  • rshell84
    replied
    Re: What's In Your Instill?

    I'm curious about this too. Hope some will chime in

    Leave a comment:


  • Amychristina
    started a topic What's In Your Instill?

    What's In Your Instill?

    Hello my fellow I.C' rs

    I'm curious to see what instill "cocktails" the majority of people are taking, and if you're happy with your results.

    Lidocaine/Heparin? Elmiron? some other mixture?

    Do you do office instills through your doctor? Or home instills on your own?

    What mixture is giving you the best results?

    Look forward to hearing others experiences with this treatment

    Amy B
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