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not your typical IC patient, but is there a typical? frustrated

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  • not your typical IC patient, but is there a typical? frustrated

    I have heard @ the IC network but didn't get into it sooner 'cause I guess I was hoping that if I just quit thinking about it/ worked on a healthier lifestyle that things would get better! Now it's just nice to share info w/people who know what I am talking about!

    I was 1st diagnosed with IC in 2007 after a myriad of health problems left me bedridden /lost nearly 30 pounds in 3 months (I wasn't too overweight to begin with). I looked anorexic & was even hospitalized. Some of other issues: Hashimoto's, kidney stones, polycystic renal disease, chronic inflammation in the stomach/ intestinal tract.
    I was doing better in 2008 and 2009. Then in the summer of 2010 after a lot of stressful situations, IC went into full motion. I suffered with it for a couple mnths b4 going to dr trying to do natural things because I tend to have a lot of issues w/ many meds (esp because of stomach). But having to go to the bathroom every 40 min & the urgency was enough to make you feel like jumping out of your skin if anyone else knows what I am talking about so finally went to the dr. Life was getting hard to function normally.
    So in Oct I had Elmiron put into the bladder to offset problems with the stomach & liver (like when orally taken). Everyone said I would feel much better. But for nearly 2 mnths I had a lot of pain in the urethra. It seems no one can figure out how I will react to anything (inc. myself!)
    It seems like I am darned if I do anything and darned if I don't do anything. And like a moving target...

    I have tried drinking marshmallow root tea/no help yet. In the summer I was drinking iced decaf mochas because of the stress and I thought I was doing myself a favor by making them decaf but since then I have figured we IC patients must get used 2 the idea of never drinking coffee esp with chocolate in it!
    People have talked @ how healthy I look now. I just don't even get into it w/ them as I have been completely miserable and feel like NO one not even my husband understands. That's part of the reason I tried to avoid going to the dr but I was having a hard time managing the "every 40 minutes." You can hide pain but you can't hide going to the bathroom all the time!
    Has anyone tried doing kegal exercises? How many per day & did they help? Since the last cysto I've had problems doing them.
    I am just now starting to read the book "To Wake in Tears-Understanding Interstitial Cystitis" by Catherine M. ****** - written by an IC patient. It is good so far and I would recommend it to anyone.

    (Note from ICNDonna: The ICN recommends books written by medical professionals, such as the IC Survival Guide by Robert Moldwin or Ending Female Pain by Isa Herrerra PT. The books mentioned in this posting represent one patient's opinion and are not, that we are aware of, supported by any IC research studies.)
    Last edited by 1caligato; 01-11-2011, 01:01 PM. Reason: to shorten it

  • #2
    Your post is rather long. I am very concerned over your Polcystic Kidney Disease. How is that going? What have they done for that? My gosh you sure have gone through such an ordeal. I am very sorry. Just my opinion only but I would stop trying to hide your distress from your Husband. Your pain is real and serious. He needs to "man-up" and support you. For me Elmiron 200MGs per day. ,diet and an 3 Hydrodistentions in five years has put me into a comfortable place for right now anyway. Only a Doctor of your on choosing can really help you and I Pray you find one that is good soon. Warm Hug, Ziggy

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    • #3
      The other kidney issue just needs to be watched closely. I am glad you are more comfortable now with the things you have been doing. Thank you Ziggy.

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      • #4
        Ic

        Like you I was in excruitiating pain for three long months, I lost alot of weight because I could hardly eat,walk,sleep maybe two hours a day and the constant trips to the bathroom. I did something stupid and drank two cups of coffee went into a flare next day.Started my DMSO treatments again got one more to go. I felt no pain for a sweet 3 weeks yesterday I awoke to a mild flare again you know Like UTI. I will see doc friday unless I get worse and they will make sure this is not UTI, I believe it is a flare though.I am worried that these DMSO treatments may be starting to fail me. I am sticking with the IC diet and I dont understand why I am in a flare now. I am so depressed with this desease, like many of you even with a mild flare you feel like crap.
        I hope and pray everyday for a cure everyone who has IC we understand each other. No one can ever imagine what we go through unless they get this horrible desease. Alot of people are so cruel they think its in our heads or that its not that bad. Dont get me wrong I am thankful not to be in a real bad flare otherwise I would not be able to write this letter, sorry for venting.
        <center>
        <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
        </center>

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        • #5
          Linda May, The problem for me and I wonder if anyone else wonders this is do you always know when/if you have a bladder infection? I guess that's why we keep going to have it tested for UTI? All the symptoms get confusing and overlap one another. Not to mention if u are diabetic and so part of the frequent urination could come from that direction. I have heard some negative things about DMSO but my dr said I could try them if I wanted to. But using anything w/ a catheter seems to cause me problems in the urethra. Coffee and chocolate are 2 of my most favorite things - esp a nice cafe mocha. I haven't had them in ages. With what's going on, I don't think I will be tempted by coffee for a long time. But when you go into remission, you think you are "fine". Right? lol

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          • #6
            Ic

            For the last two flares I noticed the difference with UTI with flares my belly bulges out.
            <center>
            <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
            </center>

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            • #7
              I can't tell a difference in symptoms between a UTI and a really nasty IC flare. The only difference for me is that a flare's symptoms usually begins to recede in two days while an infection keeps raging, so anything that continues gets checked.

              Here's a link to the diet page in case you haven't already found it:
              http://www.ic-network.com/diet/
              The link on that page, "IC Diet at a Glance (Cheat Sheet)" is a very handy resource listing individual foods, drinks, etc, as to how well they tend to be tolerated by those of us with IC.

              I'm sorry you've been through so much!
              Vicki
              "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

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