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Into the unknown...

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  • Into the unknown...

    After pondering what to say as an introduction for a week now I still have no great inspiration so please bear with me as I pour my thoughts into my first post on a message forum anywhere on anything.

    It's official that I have IC. While it WAS a relief to finally know what was wrong with me I have found out more of what exactly this means and it scares the heck out of me.

    After a cystoscopy in early January 2011 my IC was at long last diagnosed. Shortly after that I was put on a weekly DMSO treatment for 6 weeks and told that we'd see how I responded to the treatment. After the 6 weeks I was told that although it obviously was somewhat helping I'd have to continue to do these treatments on a 3 or 4 week rotation essentially forever. It was in that moment my world changed. Going from the understanding I'd have these 6 weeks of DMSO treatments that I'd have to endure to to take care of this to this is an incurable disease with massive life quality implications is huge. A huge moment in life that I assume everyone reading this has had but I'm still reeling from. How does one get your head around this is forever, this is how I am, what I can expect... I don't know... but I'm trying. With two very small children I have to try so I can find a way to have more time with them and not in the bathroom. I want to be the dad that can coach them soccer or whatever but I don't know how realistic that is anymore.

    Having found the IC diet list here has been an enormous help. This generic advice from my doctor to avoid acidic food doesn't even come close to this list. I do hope that one day I can add my own food discoveries to it with the foods I like but aren't on there. It sure has changed my approach of food=good to needing to read everything on a label to ensure it isn't going to hurt me. To be honest, I'm not sure how I didn't notice that these foods were hurting me so bad... but perhaps I was just used to being in pain all the time.

    I've been pouring through the forums trying to get a better understanding of what this and have found it enlightening and scary at the same time. Reading the section on very painful DMSO treatments has already helped as I requested a smaller catheter which did make the excruciating painful process a little more bearable. By the way, am I correct that these DMSO treatments are also called instillations?

    I am going to be ordering some of the books here to read in more detail on everything but the amount of information out there is a big frustration. I am so disappointed in the medical system that it has taken me so long to find anything about IC and if I hadn't linked to this site from the obsolete IC Canada site I still don't think I would have found this one. It does make me wonder where are all the Western Canadian IC patients? How can there be no support group in Calgary, AB when we have far more than a million people in this city now? I know I've done my fair share of support group mocking over the years but wow... has my viewpoint ever changed now. Perhaps there is an informal one out there that isn't listed in the international section?

    I feel like I'm rambling on but this is how my thoughts are just spinning through my head these days. I must say I am very greatful to have found this site and hope meet, chat, message others here that have been there and will be able to help me help myself. Who knows... perhaps can plan an IC meetup picnic one day next to the longest line of portapotties you have ever seen.


  • #2
    Hi Stephen, welcome to the ICN!

    Yes, quite a trip. First the relief in finding out what you have, then the deflation when you find out what it is. Especially the part that it can't simply be cured! -But, it can be managed!

    I'm glad you're trying the diet. I could really relate to your comment, "I'm not sure how I didn't notice that these foods were hurting me so bad...", because I say the same thing. How in the world did I not put 2 & 2 together? (I like to think I'm brighter than that, but I never saw the correlation!)

    Have you read the section on this site on treatments? Not any one treatment works for everyone so don't get discouraged! Most of us do find something that helps.

    It sounds like you're being proactive in learning about IC and all of your options. That'll go a long way in helping you on this journey.

    I had no idea Calgary was that large. One of these days I hope to make it up there,...maybe when you have the meet-up picnic. Portapotties & all!

    "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


    • #3
      to the IC Network family. I'm very sorry you have IC, but it's good that you have a diagnosis and can begin treatments. I do have a word of caution about the DMSO. I suggest you talk with your doctor and be sure that the instillations contain no more than 25% DMSO. If you do a search of the forums for DMSO you'll find some good information.

      The diet can be a challenge, but believe me when I say that it's well worth the effort. Some ICers find that single step helps more than anything else.

      Just remember that most people with IC do find treatment options that allow us to live normal lives. And that for every person posting here that they are in pain, there are literally thousands out there with IC who aren't posting because they don't need the support of the forums and are busy getting on with their lives.

      Sending warm healing thoughts,
      Stay safe

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      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.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Uracyst and a Bladder Cocktail

        Hi and welcome to the ICN. I am sorry that you have IC.

        You have been given good advice so far. Very good to try the diet and look at all the other treatments.

        If the DMSO doesn't work for you might want to do instills at home. You can learn how to do them and make your IC not such a time consuming event and you may be able to get on with your life. Make sure you use a pediatric catheter.
        You might also want to try Uracyst that is an OTC instill that you can get in Canada. Some ICers have had good luck with that.

        Hope this information is helpful to you.

        Last edited by ICNDonna; 04-30-2011, 09:47 AM. Reason: Removed direct medical advice.


        • #5
          all good advice

          Thank you so much for your comments.

          I am trying to still stay positive about this all and it is good to hear there are a few other treatment options I had not heard about yet. I was curious what peoples impressions are for how long you stick with one treatment before trying/inquiring about others? I'm just thinking that if I try too many variations all at once how will I know if something is working/helping or if I haven't stuck with it long enough to know?