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  • MelanieJean
    replied
    Marissa!!

    Hey girlie. It's good to hear from you. My symptoms vary greatly from nothing to throwing things. hehe When I was first diagnosed, I had urgency and frequency and that was it. Now I'm having pain continually and urgency, but not as much as when I was first diagnosed. The pain is what really is bothering me. I've never had to deal with chronic pain and it's really wearing me down. I have a tendency to think that I may never be normal again!! hehe But I try really hard to stay healthy and not eat what I shouldn't. My biggest symptom is pain though. It's just a constant, dull ache most of the time, but sometimes it can be sharp and just make me want to scream. ACK! Although, I've been able to maintain my cheery disposition. ~mel~

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  • marissa22
    replied
    Hey Kiyoka, it's been a while since I've been online. I just got your e-mail and wrote you back
    I'm sorry about your sinus infection. I hate those. I hope you start to feel better soon!! I was just about to ask you if taking ciprox gives you yeast infections when I read this post. Ive been getting yeast infections constantly since Ive had IC and they always make my IC act up a lot worse. I don't think Ill stop taking my meds anytime soon. Sadly I think I'm kind my body's kind of addicted to them since I've taken most of them for about a year to two years and it would be too big of a change to quit now.

    Mel,
    Interstim mainly just cut my frequency in half. I had to do journals for a before and after thing, and before I was going about 30-40 times a day. And then during my trial I cut down to about 10-20 times a day. I don't think it really works for pain personally. My pain has been a little bit less since Ive had Interstim but I think thats just more due to the fact that I'm urinating less and can sleep better through the nights. Are you thinking about trying it? What are your main IC symptoms? The doctor says it works for retention, but I don't see how because my retention definetly worsed after I had interstim. Good luck if you decide to try Interstim.

    Love,
    Marissa

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  • MelanieJean
    replied
    I guess I'm lucky compared to you guys... I've always had a high tolerance for medications, so I haven't had a problem being heavily medicated since I was diagnosed with IC. Even though most of the time it feels like the drugs aren't working, I definately notice a difference when I stop taking them. My doctor doesn't always know what to do for me, especially when I call and whine that it hurts. Sometimes they are at a complete loss and I don't know what my options are other than more meds. But I'm trying to live as best I can with what I've got.

    Tell me what exactly the Interstim does for you and what symptoms it has helped with. I'd like to know more about it to see whether or not it may be able to help me with my IC. Thanks a ton and let us know how life's been working for ya!!

    ~mel~

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  • Kiyoka
    replied
    I think I have a sinus infection ...but I didn't have a uti. well this doctor up me on Ciproxr at 500mg, two a day plus another antibiotic that I don't have the bottle but he wants me to take 3 in the morning and 3 in the evening each pill is 250 mg. so he wants me to take 2,500 mgs of antib. I hope I don't get a yeast infection. I'm happy it's working for you. I'm pretty drugged out.

    Please Marissa, don't stop taking your meds, sometimes I wish I didn't stop. It wasn't a good idea, i'm going to thailand this summer and my ic is so not undercontrol. I'm hoping next week my urologist has some new good ideas...so I will be ready to go. I hope I hope I hope...shooot it's scaring me. I just don't know what to ask her about??? any ideas??? I hope everything is going good for you, I emailed you but I wasn't sure it went to your junk mail??

    Love,
    Last edited by Kiyoka; 04-01-2004, 06:42 AM.

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  • marissa22
    replied
    My uti is finally starting to feel better. I just finished the meds, it was Ciproxr at 500mg for 7 days.

    That must be really hard going that long without an urologist. It really upsets me how little most urologists know about IC. They should have to learn about it in med school or something, you know, theres just so much ignorance about IC in the medical community. Id love to stop taking all my meds. I really cant tell how much they help, I know they do some, but its not a huge amount. Ive tried going off like the Elavil, but I get real bad weakness in my legs and literally couldnt get out of bed.

    oh and my email address is [email protected].

    Love,
    Marissa.

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  • Kiyoka
    replied
    Hey Marissa, I was great to hear your story. It doesnt' mean something is going wrong if you can't tell if the antib. is working, just keep taking the whole ten day or what ever you doctors wanted you to do. What antib do they have you on? Do you have an email address?

    I guess here is my treatment story. it's not really fun and nothing really happens. Before they know it was ic they put me on Pydridium plus and an antib. when I had my cyo/hy. she put me on Elmrion, pyridium, antib., and something for over active bladder. I kept having this horrible side effects for everything that they put me in the hospital over night, it was during midterms. I think the hyd/cyo something happened and it gave me infection. She didnt' give me anything for the pain since my body can't handle very much, when I was younger I didn't take meds at all. I was throwing up everyday, headach, dizzy from all the meds they give me, my urologist took a leave of abuse to take care of her kids. I thought it would be only four mouths, NOPE I havne't seen her yet and it will be 9 months now since I seen a urologist. There is only two others in new mexico that even work with ic and the two where 3.5 hours away, and going to school you can't leave for very long. I stopped taking my meds after five months, since my doctors wasn't there to check on me, and fix everything. I felt so much better when I stopped taking all those meds. I had five uti s since I found out I have ic.

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  • marissa22
    replied
    Hey Thanks to everyone for the replys and support.

    My doctors appointment went a lot better than I thought it would. It turn's out I have a bladder infection, and I've never actually had one before. So it sucks that I have it, but I'm thrilled that it's something that can be cured. I've been on the antibiotics for four days though and I haven't noticed any change. Does anyone know if that's normal or not?

    I have two sisters (14 and 22). My little sister is not supportive at all, but I guess she's just too young and maybe I shouldn't expect her to try and understand. My older sister has real bad asthma so she understands living with a chronic medical problem. My mom has been supportive through all my health problems. She's had bladder problems for most of her life, so she understands IC more than most of my family. The rest of my family -- they're supportive in ways -- but don't really understand what IC is and how much it effects every day of my life.

    I knew Interstim was the right thing to do. I just kind of had a feeling that it would work. My first urologist was an idiot, pretty much, and he just didn't want to really let me try anything except Elmiron to help IC. And when I asked him about a TENS unit, he told me there was a doctor in the building who did a similar thing called Interstim. And when I met that doctor he was so nice, and he told me I was the "perfect canidate" for Interstim. And I was desperate for a treatment that worked so I didn't have any second thoughts about the surgery. And then it worked!

    The interstim surgey didn't hurt that bad. It's really painful when you wake up after surgery and it lasts the throughout the next couple of days, but I thought the pain faded pretty fast. It wasn't near as bad as I was thinking it would be. The doctor told me normally the implant (it's about 4 inchs by 4 inchs and then 1 cm thick) goes in the lower back. But he didn't think it would fit there for me so the he implanted it in my butt. Which is weird, but I think it made the surgery hurt less since it's not in an area that you move around a bunch. There are now three scars, one is like a tiny circle, one is about a cenimeter, and then the big one is about 7 inchs but it's still fading.

    The actual sensation that you feel is really weird. The first time I felt it I hated it. I couldn't keep it up very high at first. During the trial I dont think I ever went past a '4' on the little 1-10 scale level. But now Ive got to where I keep it turned up high. The trial is so different from actually having it in you. It feels so much more comfortable and normal when it's inside of you. The sensation is was honestly really uncomfortable for me. It doesn't exactly hurt. It just feels weird, the feelings in your vagina and its just constant. It reminds me of an air conditioning system. It's just like having this constant buzzing in you. But after a while you just get used to it and don't even notice it. It's not painful or anything unless you turn it up way too high and then you start getting all these stabing pains, yeah, I advice no one turn it up really high just to see what happens. The worse thing about it is that it causes really bad retention sometimes. and I hate retention, but I'm learning to control that better.

    So what treatments have worked for you all? or have you not found anything that works good yet? I'd be really interested to know.

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  • Alexa
    replied
    Hey guys, I was laughing when you suggested taping your notes to the bathroom walls!! Sounds like you're very efficient! Are your teachers supportive? Do they understand about IC? When I was in high school (not thaaaaaaaaat long ago!) I wasn't diagnosed yet, but I certainly had all the symptoms. What meds are you guys on? Marissa how did your doc appointment go?? Kiyoka hope you're enjoying your spring break!

    Hugs to you all,
    Alexa

    Leave a comment:


  • MelanieJean
    replied
    Hey Marissa. It' nice to meet you. I totally know how it is to be soo frustrated with your friends when they don't understand. It's difficult for people to comprehend what's going on when they have no basis for understanding. But, Kiyoka and I are here for you. I know how hard it is to live with IC and be functional everyday, and Kiyoka knows all about the issues with school and IC. We make a pretty good team, if you ask me. If you ever need anything at all, just ask. I'd love to help you out. It makes life easier to be able to talk to people about your problems without worrying about whether they're going to judge you. You have enough to worry about as it is!!! ~mel~

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  • Kiyoka
    replied
    Dear Marissa, I hope your appointment went good. How are you feeling? Does it hurt to get a Interstim? Wow I read some of your other post and you have been though a lot, I should be asking you the questions. Did you just know that Interstim was the right thing to do? what does it feel like? I hope I didn't ask to many qustion. have a wonderful day.

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  • Kiyoka
    replied
    Hey Marissa, that is good that you are doing better, I hope all goes well for you Thursday. Please Keep me informed on your appointment. I'm doing pretty good health y's. I'm home from Spring Break, came home to eat and take my sister and mother every where. How is life going for you Marissa? Do you have any brothers or sisters? Is your family help you out? Have a wonderful day Marissa.

    Love,

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  • marissa22
    replied
    Hey. I've been feeling a little better recently, but still kind bad. I'm going back to my doctor Thursday to see if we can figure out anything new to try. How are you?! Thanks for the last post, I'd like to get to know you better too. It's nice to hear the supportive responses from this board. Talk later.

    Love,
    Marissa

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  • Kiyoka
    replied
    Hello, long time no see. How are you feeling Marissa? I hope well, yeah I know what you mean by missing class, it's kind of a pain..but when you get things under control it would feel so much better. I know you will still do great in class even if your missing class. I hope all goes well for you. I would love the chance to get to know you better, and if you need any help at all, i'm here for you and every single person on this board will do ther best. I can't wait to hear back from you.

    Love,

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  • marissa22
    replied
    That's really cool that you know somewhere from the area with IC. I think it's a great thing to meet other people with IC. I know it's so frustrating to me because my friends don't get what I go through with IC, so I really enjoy talking to other people who I can relate to. School is alright ... I've been missing a lot lately for doctor appointments and such but spring break is almost here so I can get some real rest.

    Love,
    Marissa

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  • Kiyoka
    replied
    Hey Marissa, that is cool. I Know a person with ic from your state, her name is Vicky. she is 18 I think. Yes I live in the dorms community showers, and bathrooms. I don't mind going there......its' very quiet in the dorms i live in right now. Maybe I can get Vicky to post next time she is on IM. How is school doing? Do you think it's a good idea to meet other with ic? I do, but I wanted to see what the younger aged people would think. See ya later

    Leave a comment:

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