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  • #1

    question in regards to IC symptonms

    Hi-

    I was diagnosed with IC 5 years ago. Thanks to medication and changes in diet I've gotten to the point where it's more manageable, but I'm still having problems almost every day. My main symptom is pain, most days I mainly have problems in the morning and evening, there still are times that the pain gets so intense that I don't even want to walk.

    My doctor is very good and is still willing to work with me. Currently he's retrying bladder instillations. This time they are helping some, but after 4 weeks I can't say they've put me in remission. My question is, Am I expecting to much? Do I need to accept that I'll be in pain most of the time? When I think of remission, I see it as a time, where you wouldn't know you had a problem.

    I am thinking of redoing the elimination diet to see if some of the foods which I could eat 2 or 3 years ago are not longer good for me.

    Thanks for your help.

    Carla
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  • #2
    It's a little soon for the instillations to be working completely. If they are helping at all, they are worth continuing. The food list at the link in my signature below can be a huge help in managing diet. Even after 36 years with IC, I refer to it when I have questions about something I haven't eaten in a while or something new.

    Sending healing thoughts,
    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

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    • #3
      Hi Donna-

      Thanks for your answer. I guess I thought that Bladder Instillations helped immediatly. I will continue to give it a try and not give up so soon this time.

      Thanks also for the link to the diet. I need to look at it and see what foods i've started to let into my diet that can cause problems.

      Carla

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      • #4
        You can't really cure chronic inflammation but there are things you can do to prevent it from getting any worse. Avoid any food or drinks that irritate it. Avoid alcohol, smoking. Don't use NSAID's, they not only cause stomach bleeding, they can't ulcerate your bladder. I'm having trouble with that one, but I need to get my medications switched. And take your Elmiron to help heal your bladder lining. I don't know what else you can really do. You might ask your doctor for a narcotic if the pain gets extreme.

        Comment

        • #5
          Hello cmwolf,

          I completely understand what you mean about rescue instillations. I have been doing them since August (took a bit to find the right one), and was doing them 2 to 3 times a week. Things were still not as great, and decided that in order to manage the pain I would need to do them daily. That hit me pretty hard. Even though I am still in pain daily, it is manageable. Some days are better than others. I think we all have high expectations at times, but sometimes it hits us that it is a chronic condition. We hope to reach that point of remission, but we need to be realistic also. I pursue anything I can for treatment: I am currently doing physical therapy (it has made cathing a heck of a lot less painful, and there have been some other benefits-even if they are minor). I use a TENS unit that I bought at CVS that helps with spasms, so that if I am going on a car ride and I am in pain prior, I can use it for 20 minutes and it will get me through the ride.

          I do my treatments daily as prescribed (some days I am in denial and don't want to do it, but my body knows I need it). Usually in the evenings closer to treatment time I start to have a little more pain. In the beginning it is about management. Find one goal for yourself as a person with IC and try to accomplish it. Mine is getting through the week with manageable pain, and not missing school as much. I am really getting there.

          Keep a positive attitude as much as you can (I know it is hard). I hope this helps, sorry if it is long. Message me anytime.

          Erin
          24 year old Ph.D student in Organic Chemistry

          Loves to listen to music, play with my animals (cat, fish, 2 hamsters), and live life to the fullest each and every day.

          My blog (just started):

          http://imaginenoworries.blogspot.com/

          Medications:
          Elavil 25mg (helped with nighttime urination-used to be 7 or more times a night, now just once)
          Cymbalta 60mg
          Gabapentin (Neurontin) (3200mg/day)
          Zyrtec 10mg
          Xanax 0.5mg up to 3 times a day(spasms, anxiety)
          Uribel
          Macrobid 100mg (only on days when doing an instill)
          Albuterol
          Yaz Birth Control (3 months on birth control, then period)
          Pelvic floor therapy
          Valium 5 mg (inserted vaginally)
          MScontin 30 mg (3 times a day)
          Percocet 10/325mg (every 6 hours)
          TENS Therapy, CVS machine, 30 minutes once or twice a day
          Sanctura XR 60 mg (to help control severe bladder spasms that are causing urinary retention episodes and enable normal bladder sensations)

          *** 1/4 of a teaspoon of baking soda in an 8 ounce glass of water up to 4 times a day*****

          Instill:

          Currently doing hyaluronic acid instillations (cystistat-6 instillations, once a week, already had 4...not sure if helping)

          Used to do these:

          Solu-Cortef (act-o-vial) 100 mg: 2 mL
          Marcaine (bupivicaine) 0.5 % 25 mL
          20,000 units Heparin
          3 mL sodium bicarbonate

          Diagnoses: Moderate IC, scoliosis, asthma, ovarian cysts, PFD, IBS, Fibromyalgia, vulvodynia, Fowler's syndrome (mild) 'Central Sensitivity Syndrome.'

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