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  • need your help please

    Hi all,


    For those who don't know have worsened IC symptoms for months now and docs didn't know what to do but amitriptyline(elavil) 10mg- then 20mg helped the constant urge so as to give me a few hours relief and after a hydro and a few weeks on the amitriptyline was feeling like I could deal with a few flareups a day and night.

    Then ran out of Elmiron and got worse- I thought it was due to that, so fought to get back on it(doc thought it wasn't helping)

    Was told to increase amitriptyline as needed - 30mg helped a little more, but still flaring just no constant urge just flareups of urgency and frequency
    ie relief till 11/12 then flare flare flare for 3 hours etc

    Got back on Elmiron a month ago and week before last - out of nowhere for 4/5 blissful days had little symptoms. Was amazed - for over a year not been able to hold more than 200ml and that was maximum - my voids have been 150 to less than 50 off the Elmiron.
    So was feeling good frequency wise and no urgency so measured and was 350ml! Stayed this way and got to do loads of cooking, cleaning and cleaning and since then - over a week- been FLARING big time.

    Am soooo disappointed and have no idea why so have come on here.
    I have been bad and off work for 8 months now so used to flaring and one step forward with a few hours relief and lots of steps back 2 hours later.

    It's just sooo hard to stay optimistic - was over the moon in Dec when I starting feeling a little better ie constant urge gone and last week when I had almost no symptoms apart from a little urgency and irritation for half an hour after voiding.

    Have NO IDEA why though - I have tried to go back to a diet of no foods on the IC no no list although my diet has not changed - had the odd migraine and those meds exacberate symptoms but not this much

    Am on here at 4 am now, as bladder is soo bad that tramdol, pyridium, bicarb and heating pad not helping! No infection though as did a dipstick test and will hand in a sample just in case but it seems like a flare as symptoms wax and wane........

    am extra upset as have been living with parents as symptoms bad so can't work or support self and do all househould stuff - was getting back to doing little things like local shops as long as loos nearby but been stuck indoors all week as urgency and most of all pain is soo bad. Parents are away on hols and it's homed in on how little I can do when flaring like this

    sorry for the pity party!
    IC diagnosis: Aug 2005
    Symptoms: Urgency, urge and irritation and urethral symptoms
    Flareup for 1 year til July 2007 (had constant urge and pain et al....)

    Elmiron 100mg 3x daily April 2006 - present
    Enablex 7.5mg nightly Sep 2007 -present
    Atarax, Elavil 10mg nightly (Dec 2007)
    Acupuncture - November 2007 - present

    (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)

  • #2
    HI! I get up at 4:30am for work ugh! But saw your post.
    Sounds like you are having a major flare. You said you were doing better.....back to doing house work etc.....and then said you had to 'get back' on the ic diet. Maybe you were over doing it......stress is a factor in IC and also may you ate something that triggered the flare. Usually if I eat "a no-no food" 2 days in a rows (can be different no no foods) it'll cause a flare. IC bladders can only take so much irritation before they flare. Also having to go off the Elmiron didn't help matters either. Hopefully being back on the diet and getting some rest and taking the meds will help you. Good luck to you! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

    Comment


    • #3
      First of all, you need to stay on the diet, even when you are feeling your best. It's what helps you feel good. If you keep getting flares and can't figure out why, you might try keeping a diary for a few weeks, listing what you eat and drink, along with times, activities, etc. You may be able to zero in to what is causing your flares. Be sure you are drinking enough water.

      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


      • #4
        Can IC cause severe pain regardless of being on the IC diet? I eat very bland and stick to the diet and still always have bad pain. Diet does not seem to help me. Is this normal?
        I basically eat the same thing every day. I eat 1 gluten free plain waffle to breakfast. Then for lunch I eat some cooked carrots, 1 slice of gluten free brown rice bread, and maybe a piece of chicken luch meat. Then for dinner I eat some baked chicken,or turkey, with some vegis, and maybe some mash potatoes or something. No spices at all. I will also occasionaly eat a half of a pear. I have cut out all bad things and still have pain all the time. ANyobe else still have severe IC pain regardles of following the IC diet?
        Jen

        Comment


        • #5
          Jen - I know this sounds weird but try cutting down on your meat - I improved somewhat by reducing the meat I ate. I read somewhere about there being a lot of uric acid in meat - but somone more knowledgeable can explain, or can correct me. Anyway, I also benefitted from having porridge oats for breakfast as that has been very soothing. You could try swapping meat for fish.

          Comment


          • #6
            nuts?

            i too think its something you ate
            peanuts are a big one for me.

            drink lots of water..and pee it out girl


            frequency is my main problem
            if its something i ate...i drink 1 gallon on h20 and pee for like 6 hours
            then i usually feel better.

            azo & detrol la..as needed
            see to help get me some sleep

            and sometimes..an extra elmiron helps w/ frequency too
            Quit ELMIRON due to hair loss
            Cystoprotek ROCKS!

            find me on FACEBOOK -
            search my email [email protected]

            Current Meds:
            AM Cystoprotek & ATARAX 50mg
            Dinner CYSTOPROTEK
            PM Elavil 25mg

            Comment


            • #7
              thankyou, yes I will try and go back to a strict IC diet although the only bad things I had was a glass or two of peach squash and a chocolate.
              Yes, you could be right - normally one bad thing is okay but a few......


              I have had one thought - about 10 days ago had a different brand of elavil - I noticed as they were bright blue - looking at the packet it says it has E131 dispersed blue. E133 brilliant blue and E171 titanium dioxide

              my normal elavil tablets have e171 titanium dioxide and e132 indigo carmine in them

              have no idea but will try and go back to the others and see what happens.

              Anybody on here know about colours and reactions? Then again, maybe I am clutching at straws.

              Also does anyone take tums here and are the assorted fruit ones a no-no?
              IC diagnosis: Aug 2005
              Symptoms: Urgency, urge and irritation and urethral symptoms
              Flareup for 1 year til July 2007 (had constant urge and pain et al....)

              Elmiron 100mg 3x daily April 2006 - present
              Enablex 7.5mg nightly Sep 2007 -present
              Atarax, Elavil 10mg nightly (Dec 2007)
              Acupuncture - November 2007 - present

              (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)

              Comment


              • #8
                HI! I can't take the assorted fruit flavored tums.......they have citric acid in them.....major flare material! Citric acid's in a lot of foods, drinks and flavored medication. Roxie

                Double Spinal Cord Stimulator surgery 8/09
                Unsuccessful MiniArc sling surgery 12/07
                Dx'd Hypothyroid
                Dx'd Chronic Axonal Neuropathy & Myopathy
                June 2007
                Dx'd IC May 2006 (after suffering for 25+ yrs!)
                First Cysto 1979
                First Hydro 1981 (Many treatments since then!)
                Collagin"Durasphere" injections for urethra
                Gall bladder surgery Aug. 2004
                Gastric Bypass Dec. 2004
                Dx'd: Barrett's Esphogus July 2004
                Dx'd: Vaginal Atrophy 2005
                Bladder surgery 2000
                Dx'd: IBS 2000
                Hysterectomy (fibroids) 1999
                Laminectomy 1989
                Dx'd: Degerative Disk Disorder 1989

                For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                Comment


                • #9
                  What kinds of foods are safe to eat when you cannot eat any gluten?
                  Jen

                  Comment


                  • #10
                    Hey Roxie,
                    What is MSM? Where do you buy this?
                    Jen

                    Comment


                    • #11
                      HI Jen, Here's the website where I buy the MSM gel www.jacoblab.com It can explain what MSM gel is and how it works. It's helped me tremendously with the urethra pain I've had for the past few years and I haven't had a flare since I started using it 3 weeks ago! Roxie

                      Double Spinal Cord Stimulator surgery 8/09
                      Unsuccessful MiniArc sling surgery 12/07
                      Dx'd Hypothyroid
                      Dx'd Chronic Axonal Neuropathy & Myopathy
                      June 2007
                      Dx'd IC May 2006 (after suffering for 25+ yrs!)
                      First Cysto 1979
                      First Hydro 1981 (Many treatments since then!)
                      Collagin"Durasphere" injections for urethra
                      Gall bladder surgery Aug. 2004
                      Gastric Bypass Dec. 2004
                      Dx'd: Barrett's Esphogus July 2004
                      Dx'd: Vaginal Atrophy 2005
                      Bladder surgery 2000
                      Dx'd: IBS 2000
                      Hysterectomy (fibroids) 1999
                      Laminectomy 1989
                      Dx'd: Degerative Disk Disorder 1989

                      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                      Comment


                      • #12
                        That's a tough question. I'd go to a store like Wholefoods and look for gluten free foods.......and then read the label to make sure what ingredients are in it. It's not going to be an easy task! Roxie

                        Double Spinal Cord Stimulator surgery 8/09
                        Unsuccessful MiniArc sling surgery 12/07
                        Dx'd Hypothyroid
                        Dx'd Chronic Axonal Neuropathy & Myopathy
                        June 2007
                        Dx'd IC May 2006 (after suffering for 25+ yrs!)
                        First Cysto 1979
                        First Hydro 1981 (Many treatments since then!)
                        Collagin"Durasphere" injections for urethra
                        Gall bladder surgery Aug. 2004
                        Gastric Bypass Dec. 2004
                        Dx'd: Barrett's Esphogus July 2004
                        Dx'd: Vaginal Atrophy 2005
                        Bladder surgery 2000
                        Dx'd: IBS 2000
                        Hysterectomy (fibroids) 1999
                        Laminectomy 1989
                        Dx'd: Degerative Disk Disorder 1989

                        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                        Comment


                        • #13
                          I wish I could help you - just wanted to send a hug and say, I'm so sorry you are flaring. I know that flares do end, but that's not much comfort when you are in the middle of one.

                          Does sitting in a very hot tub full of water help at all? I find it helps me better than a heating pad. And a hot water bottle (moist heat) also seems to help me much more than a heating pad. You know, those red rubber/plastic bags with the screw-in stopper? If you have one handy around the house, you might try it and see if it doesn't help you. I found I had to fill it with really really really hot water to help, but then you are risking burns, so...don't know what to tell you.

                          I hope the Elmiron kicks back in soon (you know it takes time, unfortunately) and dyes can definately irritate the heck out of the bladder.

                          Also, and I don't think this is true in your case, just mentioning what happened to me - my bladder sort of became "allergic" to Elavil, and after a couple of weeks of being on it, it started causing me worse bladder pain on it, than off. It caused a huge flare for me! I have no idea why. But I have heard of a few people experiencing that. Doctor thought I was crazy when I reported it to him. But when I went off the Elavil entirely, my bladder pain was better. It was still there, of course, I still needed Ultram and a hot water bottle, but it was manageable.

                          Blessings, and I hope you feel much better soon,
                          Lori

                          Comment


                          • #14
                            thanks Lori,
                            well back to my normal brand of Elavil and less irritation today although still flaring but not as bad as yesterday.
                            I think in my case, my non flare days nowadays are like my flares were last year so kind of feel like I'm flaring all the time but sometimes symptoms can be so bad that can't sit still for 10mins and just that increase in urgency from 10-15x a day to every 10 mins to half an hour can be depressing.
                            Also after having a little relief for a few days...

                            hoping elmiron and elavil start working again soon!

                            I think it could have been the dyes then, as recently have become sensitive to sanitrary towels etc as well and tighter clothes etc whereas up untill last year could wear my skinny jeans etc but lately even joggers have to be loose!


                            yes a hot bath helps me for that amount of time and my heat pad is the only thing that keeps me sane by dulling urgency and pain.

                            Wish I could take ultram -I take it when in dire need of it only but gives me the most awful migraine as it wears off.
                            IC diagnosis: Aug 2005
                            Symptoms: Urgency, urge and irritation and urethral symptoms
                            Flareup for 1 year til July 2007 (had constant urge and pain et al....)

                            Elmiron 100mg 3x daily April 2006 - present
                            Enablex 7.5mg nightly Sep 2007 -present
                            Atarax, Elavil 10mg nightly (Dec 2007)
                            Acupuncture - November 2007 - present

                            (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)

                            Comment

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