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  • Engtch29
    replied
    How have you been feeling?



    Have you started PT yet?

    Leave a comment:


  • HannahP
    replied
    Little SunShine.. Just want to say I know exactly how you are feeling.. 5 months in bed has left me miserable.
    I have given up all exercise currently because of the pain.. I have gone from exercising for at least an hour everyday with lots of cardio and weights and feeling pretty miserable.
    Im just hoping sticking to the diet can reduce symptoms so I can get back I suppose

    Hannah x

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  • cmclien
    replied
    Wow, you poor thing. Are you supposed to keep taking it if there is blood? Has your doctor mentioned a way to deal with that and make it go away? Thats awful.

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  • LaTayna1
    replied
    I feel you on this and I already have the diarheaa, blood in stool and my god I certainly hope I do not lose my hair. I think I would just bottom out with that. I am really down about all of this because I feel I am just to young, but so many have this problem who are younger so I have been told.

    Leave a comment:


  • cmclien
    replied
    I think the best way to do the diet is to only eat the OK foods for awhile until your symptoms seem a little better. Then slowly, like one food a day, do they TRY ITs. I usually feel a food/drink within an hour. Like yesterday I had a yogurt and immediately had more frequency/urg for a couple of hours. Not everyone feels it this fast so I guess I'm lucky that I can tell almost immediately.
    I was only diagnosed a few months ago but have had freq/urg symptoms for like 25 years following some UTI's!!! which started it all- on and off I should say. Its worse the last 10years, more pressure, only had to really watch my diet the last 6 months. I mean I stayed away from soda, cocoa, tomatoes, tea, citrus etc but not real diet sensitive. I feel like most days I have parts of the day that are good and parts of the day I am still bothered. Some days are good but then I cheat the diet which I know I shouldn't and regret it. Seems like the elmiron is helping already, less sensitivity.
    I have never had outright pain like it sounds like you have so I hope that improves for you soon. I know the diet really helps alot of people.

    Leave a comment:


  • Little Sunshine
    replied
    Cindi

    Thank you for the useful information. I have also had a problem with UTI's. I would like to take EVERY precaution I can not to get one....especially on top of the IC. But for me, the IC feels like a TERRIBLE UTI that won't go away. I bit the bullet and called in my script for Elmiron (spelling). I usually have awful side effects from meds...but I am really keeping my fingers crossed on this one. I have been following the IC diet but definitely still have major discomfort and suppose it's time to start keeping a food diary. Though I have no idea how. If I have some upset, I am not sure how to pin point the problem food....especially if the upset doesn't occur right away. Ahhh...this all seems so complicated. I agree with you, it's probably better to be safe than sorry and risk running the chance of getting a UTI. I don't think some people understand just how much they hurt. It sounds as if you have found a system that works for you. I don't remember when you said you were diagnosed and I know that everyone is different....but honestly, do you have more good days than bad? I miss my life so much. I held out hope for SO long that they would fix my UTI or that they would rid me of what they thought were kidney stones. I feel like each new day is a test of my hope. Some days I have more of it than others. I wish I had a dollar for every night I have cried myself to sleep. I know it could be worse and I am thankful that it's not. But I feel like I am a shell of the girl I used to be. My mom has always told me that laughter is the best medicine. After 3 years of chronic back pain....I have become a firm believer in that. But right now it hurts to laugh. For me, that may be one of the saddest parts.

    Leave a comment:


  • cmclien
    replied
    Macrobid

    Originally posted by Little Sunshine View Post
    I was interested in knowing more about the macrobid you take after intercourse. I am assuming it is b/c you are TERRIFIED of getting a UTI...as am I. At what dose and for how long do you take the macrobid after intercourse? I know, kind of personal so if you don't want to answer I totally understand. Lastly, is it safe to take this antibiotic even though you have IC? Thanks!
    I don't mind answering. In the last few years I just have had too many UTI's, 3 or 4 a year which doesn't help my IC at all! It doesn't seem to matter what I do. They seem to occur 2-3 days after sex even when I make sure to rinse thoroughly, go to the bathroom afterwards etc etc. So I asked my doctor if I could take them as a preventative and she said to take one before or after sex and maybe one the next day if I felt iffy at all. It works well but sometimes I get lazy about doing it cuz they give me a slightly upset stomach and then I get another one so I really shouldn't be that way.

    I mentioned it to my UG and he said it was reasonable to take one daily but I just haven't wanted to do that. He was all for me taking it daily for a number of months so it must be safe for IC. The nice thing about macrobid is it pretty much is only for the urinary tract so doesn't disrupt good bacteria much. I go ahead and double up on primadophilis reuteri on the day I take it to be safe but haven't had a yeast infection from it. I figure its probably better to take one or two a week then to get an infection and have to take alot more right?

    My dose is 100mg and I make sure to take it with food but I have a sensitive stomach to begin with. I have been taking the d-mannose too and think I will start taking that daily as it binds to e-coli if there is any in the urinary tract and then is peed out.

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  • Little Sunshine
    replied
    Cindi

    I was interested in knowing more about the macrobid you take after intercourse. I am assuming it is b/c you are TERRIFIED of getting a UTI...as am I. At what dose and for how long do you take the macrobid after intercourse? I know, kind of personal so if you don't want to answer I totally understand. Lastly, is it safe to take this antibiotic even though you have IC? Since being diagnosed I have been so much pain that I can't imagine having intercourse ever again. Alas, I'm not sure how my husband would feel about that. I of course want to keep him happy in that regard....but there is now so much anxiety regarding the way I feel, etc, etc. Any feedback you have would be wonderful. Thanks!

    Leave a comment:


  • cmclien
    replied
    Gelnique

    Originally posted by earthlady View Post
    LittleSunshine- In case you don't have much luck with the Vesicare and side effects from it- I've been taking Gelnique transdermal gel and am having a lot of success with it so far. No dry mouth and no constipation now. Vesicare constipated me in one day, and I'm not easily constipated. TMI-?
    I called and left a message at my doctors - UG -on Friday that I wanted to try this. I found the oxytrol patch wasn't quite as good as the pills but it did stop the spasms, just didn't help quite as much with the freq/urg. The pills are so drying though. I could try the patch again. I developed keratitis pelaris on my legs while using it, something I hadn't had happen since I was a kid and thought it must be something about the oxytrol going through transdermally and maybe drying out my skin....am hoping the gelnique will be gentler in that regard. It virtually had no side effects though which I really liked.

    Leave a comment:


  • wagamama
    replied
    Originally posted by Little Sunshine View Post
    carlaincalif, Thanks for your reassuring words. Can I ask you what treatment plan it is that finally began to work for you? My doctor prescribed Elmiron and then some anti depressant to help with the pain and frequency. Honestly, I am terriefied to take either. The Elmiron has some pretty crazy side effects (don't all medications). But the last thing I want after all of this is to take Elmiron and risk losing my hair. I feel like I am stuck between a rock and a hard palce, but your story gives me hope. Thanks so much for sharing. I hope it's only a few more months before I get my life back too! Good luck and stay healthy!
    I imagine you were also given Elavil (amitryptaline) as the anti-depressant; at low dosages, it's used to manage chronic pain. I've been on both Elmiron and Elavil for a year now and have had great results. I know that you can read negative things about Elmiron; some people have negative side effects, and some people just prefer not to take drugs. However, I've had very few side effects (and still have all my hair). If you are on the fence at all about trying them, I would encourage you.

    The percentage of people who have hair loss with Elmiron is very low, like 1-4 percent, and it's not permanent. If you start losing some and it bothers you, you can stop taking the Elmiron (or take less) and it will grow back.

    Again, not pushing pills, but just stating that a lot of people have had success with Elmiron and Elavil, so if you are at all open to trying them I would recommend that you do.

    Leave a comment:


  • earthlady
    replied
    Yeah me too. It stinks being this sensitive to meds. I keep telling the drs. that I am a low dose responder and usually only need half the usual dosage that other people need. They look at me like I'm crazy. I'm used to it by now.

    Leave a comment:


  • Little Sunshine
    replied
    Earth Lady, Thanks for the info...because yes, I am looking for the meds with the least amount of side effects. Seems like everything they put me on...I'm one of the rare % of people that has some awful side effect. Go figure!

    Leave a comment:


  • earthlady
    replied
    oops - forgot to add - yes it has helped a lot with frequency and urgency. Still have a twice a night visit with the bathroom, but the intense urgent burning sensation is gone. So far-anyway.

    Leave a comment:


  • earthlady
    replied
    Yes it is a script. It is a form of Oxyutynin but is transdermal. I've had a little intestinal disturbance from it but nothing like the other OAB meds I've tried. The thought behind the transdermal meds is that there are less side effects because it is absorbed directly thru the skin and don't have to go thru the stomach etc first. It's just a thought, in case the Vesicare doesn't work out. Always good to have an alternative.

    Leave a comment:


  • Little Sunshine
    replied
    Earth Lady, I haven't heard of what you mentioned...the gel. Is that through script form the dr only? Does it help w/ frequency and urgency? I am VERY afraid of anything that causes constipation because that is something I struggle with anyhow already! Ahhhh. This is too much for me sometimes. My husband tells me to go out and get my mind of of it. Easier said than done. I have had to give up most of the things I would have done to get my mind off of things. The gym, the coffe shop, school....etc, etc. I want my life back so bad it hurts.

    Leave a comment:

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