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  • 4 UTIs since end of May 2020

    Hi my IC was under control with my 1x week heparin instills and some OTC supplements that included HA, chondroitin sulfate, and collagen and Aloe for the past 2 years. At the end of May I was diagnosed with a UTI with ecoli being the culprit and prescribed Macrobid, and then again the same thing in July, August and now this week.

    This week the nurse practitioner I saw put me on Cipro until the culture came back. I was just told by a nurse that there are two bacterias both ecoli? Are there two strains of ecoli? She is consulting with the Dr. because Cipro is resistant to e. coli and I should have known this, just waiting to hear what they want me to take because I said I did not want to be put back on Macrobid because I feel it did not work the last 3 times.

    I have a feeling that the Macrobid never fully got rid of the bacteria the first time and it has been one long UTI I did have some relief but not quite all the way. My Uro/gyno had suggested premarin at the start of all this to help with possibly thin tissue, but this does bother my IC and I am actually getting emails from Premarin saying cancer stuff. So anyway I don't want to go the Premarin route for rUTIs. I have never had recurrent UTIs ever. My last UTI was in 2018, short flare then back to normal.

    My son who is a quadriplegic had over 6 almost near death UTIs last year so I am very familiar with the testing and all should be cultured to see what bacteria you need to treat. His solution however because of his condition was to finally have a indwelling catheter in instead of intermittently cathing. Anyway back to me. He takes Hiprex and I don't know why I didn't think of it before and starting looking online and found that there have been some good results with taking Hiprex (methanamine) to try and prevent rUTIs. It also says that Hiprex needs an acidic environment to work and works more effectively if taken with Vit C.

    Is Vit C IC friendly? I did read some threads on this forum that Hiprex has helped some but are they taking Vit C as well. Also do people on here have a problem taking Vit C? In my supplement it did also have 60mg of Vit C and that amount did not bother me, but I think you need to take a higher dose when taking the Hiprex.

    Would love to hear if Hiprex is still helping anyone either with recurring UTIs and/or their Ic. Thank you.

    I found studies for UTIs (not IC) and Hiprex in these articles.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6759703/

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784967/

    Also does anyone know how to change my signature text????
    Last edited by tangerine3; 09-18-2020, 06:49 AM.
    Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

    Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

    - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
    - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
    - Ativan when needed to relax.
    - Elmiron only took for a couple of days; didn't like it
    - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
    - tramadol worked great for back aches
    - generic claritin D worked best for me for calming bladder down and my panging
    - still taking cysto renew 4x a day and believe this and diet helped the most.
    - took dosage of cysto renew down to 2x a day and still ok

  • #2
    Yes, vitamin C can be a problem for an IC patient. Since you've had so many infections, I wonder if each has been cleared --- I'm assuming you have taken the full prescription each time --- you might want to have a culture done a week or so after completing a series of antibiotic. Are you self instilling? If so, I suggest you review your procedure with the nurse in your urologist's office. You're probably doing everything right, but I wanted to throw out any suggestions I can think of. Are the infections happening shortly after an instillation?

    I hope you're able to find a solution soon; I know how awful an infection can feel.

    Warm 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


    • #3
      right, they never ask me to follow up after meds are taken, I have an appt next week with urol/gyno to discuss. For now they again have prescribed macrobid said it was the only antibiotic that treats, but every time I see my lab results (directly through labcorp) there is a list of others but they always say Macrobid I am going to bring that up to them and thanks I will also mention retesting this time, I thought urols always did this in the past, but now I think since no symptoms then no treat, or just don't think about it anymore.

      I will have to start keeping track of when I instill and if I get an infection it has all be a blur, so i'm not sure . . . .but i have been self cathing for years now and never a problem like this

      What is weird is the UTI symptoms are not that bad a little sore after urinating, some spasms but over all just ickyness and some bloating and probably inflammation, but bacteria count was high and blood in urine and on top of all this i have some major lower back pain specifically over my left hip might be sciatica pain I don't know (never had it) they had me do a lower lumbar xray and still waiting to hear if the report said anything that might be causing it. I've had that for about 2 months now, they just put me on a dose of methylpredisolone and a muscle relaxer called Metaxalone 800mg 3x a day it went away for about 2 days but now is back again and the muscle relaxer just made me weird and unfocused. I am doing stretching exercises too but not helping much.
      Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

      Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

      - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
      - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
      - Ativan when needed to relax.
      - Elmiron only took for a couple of days; didn't like it
      - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
      - tramadol worked great for back aches
      - generic claritin D worked best for me for calming bladder down and my panging
      - still taking cysto renew 4x a day and believe this and diet helped the most.
      - took dosage of cysto renew down to 2x a day and still ok

      Comment


      • #4
        still waiting to hear about Hiprex for anyone
        Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

        Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

        - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
        - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
        - Ativan when needed to relax.
        - Elmiron only took for a couple of days; didn't like it
        - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
        - tramadol worked great for back aches
        - generic claritin D worked best for me for calming bladder down and my panging
        - still taking cysto renew 4x a day and believe this and diet helped the most.
        - took dosage of cysto renew down to 2x a day and still ok

        Comment


        • #5
          Have you made any changes in catheterizing supplies? I'm trying to think of anything that might help. Have you changed personal or laundry soaps?

          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


          • #6
            Not really. i have heard from both Drs. now one put me back on Macrobid and the other said 2 strains of e coli and also said yes to Macrobid and wants me to come in on Monday for a Rosephen shot. I did not know there were different strains of e coli. What is bothering me more is I have figured out that it is not sciatica pain but sacroiliac joint pain! that's another forum. . . . .found some stabilization techniques and strengthening exercises that have seemed to help.
            Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

            Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

            - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
            - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
            - Ativan when needed to relax.
            - Elmiron only took for a couple of days; didn't like it
            - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
            - tramadol worked great for back aches
            - generic claritin D worked best for me for calming bladder down and my panging
            - still taking cysto renew 4x a day and believe this and diet helped the most.
            - took dosage of cysto renew down to 2x a day and still ok

            Comment


            • #7
              Thanks for letting me know. I hope it continues to help.

              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


              • #8
                HI! sorry just saw this after being off here for ages. first if it's e-coli D Mannose is amazing. e-coli clings to it, and washes away. my urologist recommends it with great success. i used to take it a few times a day during infections, then 2x a day to prevent them plus before e/ after sex...
                Hiprex, i used this too to prevent them and it seemed to help even without vitamin C with it. i don't take it anymore but i did for about a year

                Comment


                • #9
                  I just had another thought. If you use a lubricant when you self instill, are you applying it to the catheter directly from the container? If so, you might want to start with a new container, then squeeze some onto a sterile gauze and dip the catheter from the gauze. It's possible that a multiple use container could become contaminated. It's probably not an issue, but could be worth trying.

                  And I agree about D-Mannose.

                  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


                  • #10
                    Hi I have not been on here forever. Sorry your having problems with UTI’S, I have had more than my share of them too, 4 since October 1st, but the 4 worst of my life, I had no idea they could get that bad.

                    I never found Macrobid worked very well for me, but everyone is different. UTI’S are often from E. coli, Macrobid works for E. coli most of the time. Our urine samples should be cultured, and then tested for the right antibiotics to use for that bug.

                    Hi Donna I am very pleased to see you are still on the forum. I assume like many of us you have been hibernating at home to avoid Covid, not insulted intended if you have different beliefs about Covid. I have been home pretty much since last March officially, but I had stopped going to stores, touching money, and using shopping carts the beginning of January.

                    I have a story to tell, what has brought me back to IC network. I had been in pretty much full remission/or well controlled IC for years, to poof gone in a blink of an eye.

                    I need to recover more, to have the energy to write my story down.
                    My are with you all. May you all find a way to peace and joy in your lives.

                    Comment


                    • #11
                      Originally posted by Mothergoose View Post
                      Hi I have not been on here forever. Sorry your having problems with UTI’S, I have had more than my share of them too, 4 since October 1st, but the 4 worst of my life, I had no idea they could get that bad.

                      I never found Macrobid worked very well for me, but everyone is different. UTI’S are often from E. coli, Macrobid works for E. coli most of the time. Our urine samples should be cultured, and then tested for the right antibiotics to use for that bug.

                      Hi Donna I am very pleased to see you are still on the forum. I assume like many of us you have been hibernating at home to avoid Covid, not insulted intended if you have different beliefs about Covid. I have been home pretty much since last March officially, but I had stopped going to stores, touching money, and using shopping carts the beginning of January.

                      I have a story to tell, what has brought me back to IC network. I had been in pretty much full remission/or well controlled IC for years, to poof gone in a blink of an eye.

                      I need to recover more, to have the energy to write my story down.
                      Yes, I'm still around --- I felt very alone with IC until I found the I found the IC Network. As long as I am able I will be here. I'm also pretty much at home until this pandemic is controlled.

                      I agree with the need for cultures for IC patients, especially with repeated infections. It can be hard to determine whether discomfort is from an infection or an IC flare.

                      We just finished being self quarantined after being notified that I was exposed in my ophthalmologist's office during a visit to resolve a problem. The dot.com sales sites are doing very well by me.

                      Would love to see your story --- if it's easier, you could post in segments.


                      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


                      • #12
                        AN UPDATE:

                        Hi I have had IC since 2008 diagnosed with hydrodistension. I've had ups and downs, been in remission for years here and there and was finally comfortable with self cathing at home with 10,000 units of Heparin 1x a week and sometimes added to the instill 20ml %1 lidocaine and 3ml 8.4% sodium bicarbonate. So self cathing for years. Well as of May 2020 i started getting UTIs I have had oh probably 7 till now and have just gone the normal route of taking macrobid that would help at first then it would not help and then I think it actually made me flare horribly one time. I have tried bactrim and even had a couple of injections of Rosephin; I thought I was allergic to Penicillin but was able to take the Rosephin shot twice the 3rd time, for my most recent UTI a couple of weeks ago I got a rash but it only lasted about an hour. But the UTIs just came back. At this time I don't think I have a UTI what is weird when I have one my urine smells like ham (i know weird huh LOL) So at this time my urogyno has got me on Trimethoprim 100mg 2x day to try and ward off UTIs. I have been on it for 2 weeks now and I was feeling good but then i think it is upsetting my stomach and I started taking acidophilus but to no avail. Just want to let you know that the only thing that bugs my IC is when I get a UTI or sometimes just slight irritation if I am constipated and when the stool passes my bladders get irritated but does not last. But now the Trimethoprim is upsetting my stomach and making me either constipated or the opposite and just causing to many bowel/stomach problems which irritate my bladder now I have a constant burning down there but only at night during the day I am pretty much okay except rectum pressure. I was doing a test on my own and was wanting to find out if I could take the Trimethoprim for a month, that is what my Dr. suggested, and quit self cathing to see if that was what was causing my UTIs. So now I'm stuck. I have also tried Methanamine (hiprex) daily to ward off UTIs daily but I think it also irritated my IC but not sure because so many UTIs I didn't know what I had IC or UTI. Anyway I am going to stay of Trimethoprim for 2 weeks to see if that was what was really causing my stomach problems.

                        When in remission I could eat whatever I wanted, I am now back on the diet although when my IC acts up it is usually muscle related (tension) or the UTIs.

                        One thing is also I have switched catheters for years I used Cure Catheters
                        https://curemedical.com/cure-catheters/cure-catheter/

                        And then switched to a hydrophilic catheter that comes with a sterile water packet for lubricant
                        https://www.vitalitymedical.com/rochester-hydrophilic-personal-i...

                        But that did nothing.

                        Just wanting some feedback to see what might help mostly with the UTIs. And does anyone else on this forum do instills to treat their IC?

                        Thank you.
                        Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

                        Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

                        - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
                        - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
                        - Ativan when needed to relax.
                        - Elmiron only took for a couple of days; didn't like it
                        - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
                        - tramadol worked great for back aches
                        - generic claritin D worked best for me for calming bladder down and my panging
                        - still taking cysto renew 4x a day and believe this and diet helped the most.
                        - took dosage of cysto renew down to 2x a day and still ok

                        Comment


                        • #13
                          I don't do self instillations now, but I did for quite a while. I only had one infection when I first started doing them.

                          You might want to try D-Mannose to help prevent infections --- I'm not positive how effective it is, but could be worth a try.

                          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


                          • #14
                            I am on D-mannose about the only thing that does not cause a problem on top of a problem But obviously it is not working but taking it anyway. I had a terrible night I don't think the trimethoprim was the problem, I have been off it now for 3 days and what I'm feeling now is like another UTI. I have not self cathed in over 3 weeks so I just really believe that the onset of all the UTIs beginning in May 2020 they have never been cured i think it is still the same one! no antibiotics are helping. I am going to quest for another culture today.
                            Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

                            Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

                            - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
                            - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
                            - Ativan when needed to relax.
                            - Elmiron only took for a couple of days; didn't like it
                            - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
                            - tramadol worked great for back aches
                            - generic claritin D worked best for me for calming bladder down and my panging
                            - still taking cysto renew 4x a day and believe this and diet helped the most.
                            - took dosage of cysto renew down to 2x a day and still ok

                            Comment


                            • #15
                              Are they doing cultures to be sure you have infections and not IC flares?

                              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

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