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    I am 32 years old and was diagnosed with IC about 5 years ago. I actually started having symptoms in high school (1994) and it kept getting progressively worse. The message that I heard over and over again from doctors was, "I don't see any bacteria, but your white blood cells are so elevated that it indicates a UTI." So, they would give me antibiotics and Pyridium and send me home. It got to be so frequent that I asked to be referred to a Urologist in 1999. He did an in-office cystoscopy (most painful medical experience in my life) and told me that he didn't see anything but inflammation. He gave me a prescription for 6 months of Septra (antibiotics). That stuff gave me so many yeast infections that I finally gave up 3 months into it. I was still miserable and just kept going through the cycles of going to the medical clinic and getting more pyridium and antibiotics about every 3 or 4 weeks.

    Then, about 5 years ago, I got a different message from my doctor. This time he said, "I don't see any bacteria and you have elevated white blood cells, but we can't do anything for you anymore without seeing bacteria." They told me that there was nothing wrong with me. I am a nice person, but I started crying and yelling at my doctor, "There IS OBVIOUSLY SOMETHING WRONG WITH ME! THIS IS NOT NORMAL!" I went home in so much pain with nothing to make me feel any better physically or emotionally.

    I started researching as much as I could and found information about IC online. (Thank you ICA and ICN!!!) I printed out the info and went back to my doctor with it. He referred me to a new (younger) urologist. I had to start over again with "proving" that there was something wrong. For my next 30 flares, I had to get a urine culture at the hospital before I could take anything, but at least he gave me access to pyridium and some stronger pain medication for emergencies. Out of all the cultures I took, only 1 was a UTI.

    I have learned a lot about my diet triggers. When I first started having these problems, I had absolutely no idea that I was hurting myself so much. Now, I haven't drank cola in 14 years, stopped drinking tea (which I used to love), stopped taking vitamins (who knew that was hurting me so much!), stopped taking cold medicine when I get sick, quit eating spicy foods, etc. It seems like my list of off-limits food and drinks continue to expand. The latest one I found was peanuts!

    For me when I flare, it actually hurts the worst while I am urinating and right after. My urethra hurts and burns so badly and then it starts spasming. With each spasm, my whole bladder contracts and I get stuck on the toilet trying to pee out nothing every 30 seconds until pain medicine finally kicks in. It feels like I am getting stabbed repeatedly with a knife into my urethra.

    When my pain is less than 5 on the 1-10 scale, a hot pack (rice pack that I put in the microwave) helps a lot. I go to sleep with it on my belly 90% of the time to help my muscles relax. When the pain is over 5 on the scale, pain medicine is the only thing I have found that gets the spasming to stop. I try to head it off when the pain is still manageable and I try not to take the prescription pain medicine unless I absolutely have to.

    The other weird thing that happens when I have flares is that my whole belly swells up. My belly is normally not flat by any means, but within 20 minutes I go from having a little extra room in my size 10 pants to not being able to fit in size 14's. I have read about IC belly, but I wish I knew what was actually swelling.

    My doctor has me on 10 mg of Toviaz for the bladder spasming and 50 mg of Hydroxyzine (Atarax) to combat the histamines. Both are helping a lot because if I am even 2 hours late in taking the medicine, my bladder starts to hurt.

    I have been successfully using Propoxyphen (Darvocet) for emergencies when my pain gets completely out of control. I just read that they recalled it in November, so now I am not sure what I am going to do. (I only have 3 pills left in my emergency kit.)

    So, that is my story. I am getting by, some days better than others. I am interested in trying the Botox procedure when insurance decides to pay for it, but otherwise am in a holding pattern right now. I am curious if anyone on this forum has any recommendations for effective emergency pain medicine that I should ask my doctor about? I am also curious if anybody has figured out how to help with the belly swelling?

    Thanks for listening!

  • #2
    to the ICN Morgen!

    Wow, outside of the Toviaz and pain medication part on level 5 and above, you just wrote my life story. Right down to the last food trigger found being peanuts! {{Twilight Zone}}

    My doc won't give pain medication so I've no experience to make recommendations on that one. I'm afraid my only remedy for IC belly is in trying to put an end to the flare causing it. Drinking lots of pure untreated water, baking soda in the water (if diet is sodium restricted talk to dr first), rest and extra loose clothing so as to not cause any further irritation.

    Amazing how quickly that belly swelling appears isn't it?

    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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    • #3
      Hi Morgen! Welcome. I have IC and back pain. I was controlling my pain by Darvocet as well. (For my back, I just started having bladder pain the last month and a half.) My urogynecologist wont give me pain meds. But he did put me on vaginal Valium and vaginal Baclofen which help with the spasms. Also Prosed instead of pyridium. Also on hydroxyzine, Enablex. For my back pain, my regular doctor put me on something new, it is called Nucynta. He said its less addictive than other pain meds. I usually take it for my back but when my bladder is bad I take it for that too. The nice thing about it is it is fast relief. Within about 15 minutes, the pain is manageable. I have seen a forum on here about some people who are using it for IC pain. Anyways just an idea. Some people are on vicodin or Percocet but not all uros want to prescribe them. Also, if you were getting by with Darvocet, you might want to try Ultram, since it is nonnarcotic like Darvocet was. I never had much luck with Ultram but docs are usually more willing to prescribe it.

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      • #4
        I wanted to add my welcome. It sounds like you are gaining control of your IC and if you look around here on the website there is a lot of information to be learned. Also go to my signature line and you will find our area on the diet. That may give you some guidence of some foods that may be ok and some to avoid or approach with caution.

        There is also a product called Prelief that many use to help with the acid in food.

        Good luck and again welcome to our site!
        Jolene

        "Life is what happens when you are making other plans" John Lennon

        IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

        Information for Patients can be found here.
        http://www.ic-network.com/patientlinks.html


        Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




        Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

        "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

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        • #5
          Thank you

          Thank you guys for the warm welcome! I really appreciate it.

          Both this site and the ICA site have been so helpful already! Just about every time I go to my Urologist, it seems like I am educating him instead of the other way around. I asked about valium the last time that I was there and he acted very uncomfortable for some reason. He told me that if I wanted to try anything that we are not already doing, he would have to refer me to a clinic in Indy or St. Louis. He said that he just doesn't have any experience with anything but basic meds and hydodistention (I did that a few years ago and, for me, the severe pain after the procedure outweighed the few months of relief that I got).

          I think that the doctors are getting more information than they used to, but it is still no where near what it should be.

          Again, thanks for the warm welcome! I will ask my Dr. about Nucynta during my next appointment in a couple weeks.

          Comment


          • #6
            Hello Morgen!

            Originally posted by Morgen View Post
            Thank you guys for the warm welcome! I really appreciate it.

            Both this site and the ICA site have been so helpful already! Just about every time I go to my Urologist, it seems like I am educating him instead of the other way around. I asked about valium the last time that I was there and he acted very uncomfortable for some reason.

            I think that the doctors are getting more information than they used to, but it is still no where near what it should be.

            Couldn't agree more Morgen!! It's so frustrating. And I find the minute I mention that I read about something 'on the internet' he immediately assumes I've been using some crazy quack website, and that the info isn't reliable...So frustrating!

            I also have the same experience with the I.C belly!

            Jem x
            Last edited by Jem; 01-12-2012, 01:49 PM.

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