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  • Worst flare up ever? Or kidney failure?

    Hello! I’m not sure if I’m doing this right, this is my first post on the forum, please forgive me if I’m doing it wrong.
    I was diagnosed in 2018, but I’ve had symptoms since 2010 when I was 12yrs old. Now 21. I usually can manage my flare ups with pyridium once or twice a day, then I’m good. I get mild flares every other month or so. However, recently I’ve had the worst flare up of my life, I was on pyridium 3X a day for 2 days before I could see a doctor for an antibiotic, as I assume that’s the culprit, and the pyridium is barely touching the pain. I’ve been on the antibiotic (Bactrim) for 40 hours now, and taken 4 doses. I can tell a slight difference, but not much. I have never felt this bad in my life, I still have urethra pain and bladder pressure and urgency, I feel weak and I can barely choke down enough food to take my meds, which in turn make me nauseated. My right kidney is hurting like heck, so I’ve been in a hot epsom salt bath for about 20 of these past 48 hours. I use a heat pack to try and sleep, and while trying to work. I have not slept much since the pain started 3 days ago. Is there anyone who has had a similar experience? Any advice?
    Thank you so much!!!

    (also, I am not necessarily on the IC diet, as the only triggers I know of are alcohol and caffeine, so I avoid those, but on good days I can have a small drink that is less than 5% alcohol/vol, with no issues. I did have a 3.1% drink the day before my flare. I have been drinking water and eating bland food ever since.

  • #2
    First of all, I'd like to say to the IC Network.

    Were you diagnosed with an infection? If so, forty hours may not be enough to get rid of it. Did they do a culture and sensitivity test to be sure you are on the right antibiotic for the specific "bug" you have? Usually Bactrim is effective for "most" urinary tract infections, but not always.

    I do have a suggestion --- beginning today, give the IC diet a try --- stick to it 100% to see if it helps --- and during the try it period, keep a detailed diary, noting time of day, everything that goes in your mouth, urinary frequency, activities, pain levels. Sometimes that can help identify triggers and it can be well worth the effort.

    Please post again and let me know how you are doing.

    Sending warm healing wishes,
    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
      Thank you so very much Donna! I’ve been kinda just spectating this forum by reading posts for about a year, I had made a different account then, never posted. You’re like a legend!
      I am waiting on the lab to clarify my culture results as it came back without an actual result, it just said “comment” so I asked for clarification. I am having a little less pain today so I’m hopeful that it’s working, but I’ve developed a terrible yeast infection too so that’s no fun. I will definitely start the diet and the diary. Today only I had plain oat/coconut granola, unsweetened yogurt, and rice with steamed broccoli, one of my favorites. I appreciate your suggestions and support!

      Comment


      • #4
        Hi again! I got a call from the lab today and the culture results were that there was no indication of infection, but there was a tiny amount of bacteria, they said if the antibiotics are helping to complete them, and if not to go see my primary care doctor. I do feel a bit better pain wise, I’m only taking one pyridium a day rather than 3, and it does seem to help. However I am worried since there wasn’t much bacteria, what was causing the awful flare and hematuria? Possible kidney stone? I am debating calling my primary care doc to find out.

        Comment


        • #5
          I'm glad you're at least doing better. Have you had a yeast diagnosis? If so, I suggest contacting your primary care doctor for help with that --- that's less expense for you --- and he/she might be willing to order something without your having to take the risk of an office visit during this coronavirus time.


          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
            Abbs, don’t know anything about pyridium I’ve been doing elmiron which saved my life but now they’re talking about it causing eye issues with some. I’ve not had to stick with ic diet, I do prelief or baking soda if it starts giving me issues, I’m 80percent Symptom free most of the time but when I get flares I have an instill done at my urologist, hope that helps, Sarah
            Have had symptoms since March 2010
            Have tried: Ditropan, Detrol, Aloe Vera, Uribel, Myrbetriq, Vesicare, others I can't remember
            Diagnosed Jan 2016, with cysto/hydro,(no hunners) worked great for 4 months, another hydro in July
            I just started drinking Aloe again and taking hemp oil which is getting great reviews!!
            25mg hydroxyzine before bed,
            25(was on 50) mg Elavil before bed, now on 400mg Elmiron, since about Sept.
            valium suppositories when needed
            Ambien before bed
            for a CURE,

            Comment


            • #7
              Thank you! (This is also a reply to Donna)
              I have been referred to an IC specialist that’s actually listed on the providers list on here! Dr. Evans at wake forest baptist in NC. I’m very excited, as I’ve finished my antibiotic and still having symptoms, but not as severe as before. It’s been going on well over a week now. Mostly in the evening is when I hurt and have the urge to go, but also some mornings, like today. I am back at work (uncomfortably) but I’m back. I am down to 1 dose of pyridium a day or so. I’ll be sure to ask about instillations!!!

              Comment


              • #8
                OH also Donna, my primary care doc did prescribe a one time pill for the yeast, which I thought had gone away but she wanted to be sure. She did give me a prescription of amytripteline to try!

                Comment


                • #9
                  Originally posted by Abbs View Post
                  Thank you! (This is also a reply to Donna)
                  I have been referred to an IC specialist that’s actually listed on the providers list on here! Dr. Evans at wake forest baptist in NC. I’m very excited, as I’ve finished my antibiotic and still having symptoms, but not as severe as before. It’s been going on well over a week now. Mostly in the evening is when I hurt and have the urge to go, but also some mornings, like today. I am back at work (uncomfortably) but I’m back. I am down to 1 dose of pyridium a day or so. I’ll be sure to ask about instillations!!!
                  I have heard lots about Dr. Evans --- he has an excellent reputation in the IC community. If I didn't live clear across the country (Oregon), I'd make an appointment with him.

                  Hope you're feeling better.

                  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 Donna! I finally got to see Dr. Evans today, and he discovered that I have severe pelvic floor issues. So I’ve been prescribed physical therapy and muscle relaxers, as well as desert harvest aloe. He is doing a study with that brand of aloe supplement. I am happy to have some type of answer, but I still want to find a better way to handle flares. Hopefully the aloe will help!

                    Comment


                    • #11
                      You might want to try keeping a diary for a while to see if you can identify what is bringing on flares. Include in the diary: time, everything that goes in your mouth, frequency, activities, pain levels. Then when you have a flare, look at the diary to see if you can identify come common things.

                      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
                        Thank you! I do keep a journal, I’ve noted that certain seasonings and spices are a trigger. But I’m on the Ic diet now, and still having flares. The muscle relaxers aren’t quite working yet, as far as I can tell. I just feel constant urgency and I’m so exhausted from it. I’ve still got to get my hands on some desert harvest aloe, as he suggested. Hopefully I get somewhere! Thanks again

                        Comment


                        • #13
                          Originally posted by Abbs View Post
                          Thank you! I do keep a journal, I’ve noted that certain seasonings and spices are a trigger. But I’m on the Ic diet now, and still having flares. The muscle relaxers aren’t quite working yet, as far as I can tell. I just feel constant urgency and I’m so exhausted from it. I’ve still got to get my hands on some desert harvest aloe, as he suggested. Hopefully I get somewhere! Thanks again
                          If you scroll to the top of this page and click on "ICN Shop" you'll find a source for Desert Harvest Aloe.


                          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
                            So, I haven’t been on here in a while and I am so glad I came on here and read your post. I literally just went through the exact same thing with a UTI. I thought it was a flare up at first but pyriduim or tramadol didn’t even touch the pain. I go to the doc and they told me I had a UTI. It took a good two days before I felt any relief aside from using the Vicodin that my doc prescribed me. I still have symptoms and I’ve given up trying to figure out what causes my flares because it seems like once I find something that is triggering my IC, the next time I eat it I’m fine. Most of the time I am in acceptance with this disease. Usually it’s controlled with tramadol and pyriduim. Right now I’m not though because of the whole UTI thing and I’m in nursing school so I can’t just not show up. That was one of the reasons why I logged in today because I needed to know that I’m not alone dealing with this. So, thank you for posting your story. I hope you are feeling better.

                            Comment


                            • #15
                              [QUOTE. [/QUOTE]

                              Oh goodness, bless you . I am glad you found some comfort in knowing you’re not alone, I hope youve found relief. I’ve started the desert harvest aloe and it’s helping! I’ve had a couple more flares that the pyridium isn’t doing much for, I take it more than I’m supposed to so I can get some sleep, I hope I’m not building a tolerance. Also, go you for being in nursing school! That is definitely not easy. I just graduated from undergrad, about to start grad school, I’m sure the stress won’t help the IC. Have you found that stress from school makes it worse?

                              (Also you posted this on my birthday, ha how funny. )

                              Comment

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