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It will NOT always be this way!!

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  • serrat
    replied
    IC Support Group in Portland

    Originally posted by samanthareiche View Post
    Hello to anyone who might be able to help, or support me?

    My name is Samantha. I just recently have discovered I have IC, and I'm so new to it all! I feel alone because know one understands the pain I'm in! You all seem so strong, and have discovered how to live with it! TEACH ME! PLEASE! I find my issue being the diet. I been wanting juice, but every juice seems to be something I cant have.?
    Hi Samantha, Just wanted to let you know that there is an IC support group that meets here in Portland every other month. Find out more here: www.icsupportor.org I've gotten a lot out of the meetings and often there are guest speakers.

    -Serra

    Leave a comment:


  • MaryS
    replied
    samanthareiche

    I am still taking it as I feel it does help my ic. I am afraid to stop taking it and go back into that cycle of pain. I think it also helps me sleep.My doctor does NOT give out any pain meds so this is my only option from HIM.

    I did lose 15 pounds . How did I do that?? I got a puppy and I am chasing her around all day and night. I also take her for long walks to burn her energy off. She is a chocolate labrador with HIGH ENERGY!! i used to be able to eat like a horse and not gain a pound (was always slim) but since going on all these meds it seems to have slowed down my metabolism. I eat smaller meals now.

    Leave a comment:


  • samanthareiche
    replied
    Mary!

    Are you still on the medication or something different? I feel like I might stop taking it! I still workout, and watch what I eat but I feel like its still putting some weight on me! ? Its a bummer..

    Leave a comment:


  • MaryS
    replied
    I gained 20 pounds from elavil. i always maintained my weight,might go up or down a pound. I eat less now then before and activity level is the same. I mentioned it to my dr and he said it is not the elavil...I didnt argue but I know my body. the weight came on one pound a day each day til i gained 20 pounds.

    Leave a comment:


  • samanthareiche
    replied
    Has anyone noticed a weight gain from the medicine ELAVIL? just curious!

    Leave a comment:


  • backwoodsgurl
    replied
    Samantha

    Samantha,

    Yesterday, and friday and saturday were pretty bad for me as well. I do as well have face book. However i try not to expose my whole life on there but yea I will add you and hope to message and chat with you there as well.

    Instills are a form of medicine. They are shots done through a cathater. they hurt but some they help. ... They have a forum section on them. ...

    hope to talk soon.

    Leave a comment:


  • samanthareiche
    replied
    backwoodsgurl.

    What are instills? They sound painful! ?


    Today has been a bad day for me. Stupid Elavil is screwing with my moods! Today I feel like I got hit by a big truck! ? I went for a run yesterday, and was feeling better! Today BLAH!

    I do have a Facebook if you would like to keep in contact that way too! ? : )

    Leave a comment:


  • backwoodsgurl
    replied
    Samantha,

    I have had it since around the time of june or july but got diagnosed in end of sep. first part of oct. I am on tramadol, oxybutynin, pryidum, birth controll, and Rescue instills every week at the docs. I had a cystoscopy done thrusday ( surgery like procedure.) horrible pain since. Missed work friday, and have been in bed pretty much since except this am when i thought i was "ok" and went to find some fabric material to make the boyfriends xmas present... BAD choice... pain is Horrific now... That time of the month i am pretty much dead... and worthless.

    I cant take tynol, ibuprofen, etc. I am allergic. so no bueno. If you go to the newbie board i have a thread posted that tells my full story. I have heard good and bad from elavil, Dont know if i will try. The doc said we will do instills and go from there. They are a god send but only after you pee them out. They work, Then you pee ( have horrible pain for about 2 hours ) then its perfect for a few days...

    I do hope to see you soon. I will add you on my chat list. If you want you can private message me! Would love to chat!

    Leave a comment:


  • samanthareiche
    replied
    Idaho ; )

    So how long have you had this? I was just at the Urologist two days ago, and she ran a few tests. She decided it is IC, and gave me Elavil! Are you on any medications? Yes I have notice it is the weather too! Yesterday I was in A LOT of pain.
    Today the pain has been tolerable, like a level 6. Ive been keeping a pain, and diet Journal! MY GOD! That time of the month was just HORRIBLE for me, I was in bed for 2 days straight. The Urologist suggested over the counter benadryl to relieve some of the inflammation, and pain! She also said if you know when your period is coming around the same date each month start taking 800 mg of ibuprofen when the pain starts occurring. She said it might help relieve some of the pain.

    what was Jinny other post? Talk to you soon

    P.S. Im not sure if I like Elavil? The past three days I have been taking it I feel like its messing with my moods, and emotions! I have felt kind of grumpy,
    and somewhat depressed! Will see! I ll give it a few more days.

    Leave a comment:


  • backwoodsgurl
    replied
    Samantha,

    You live in the same neck of woods(few states over and under) as i do. I have noticed with this in the short time i have had it that its also affected by weather... Here its getting ready to snow, and well i have been in bed but i have worse pain as you do around that time of month.... Being new, a little ahead, i would love to talk with someone as i go through this... more personal. let me know if interested...


    Rubes, Thank you this has Helped me smile a lil today...

    Jinny, You made my day on my other post! I cant thank you enought!

    Leave a comment:


  • samanthareiche
    replied
    Rubes

    I have notice there is so much information on here. I love it!
    At the moment I'm on no medication, I'm due to see a urologist Wednesday! I was just at a gynecologist last week, and she took down all my symptoms, and said its definitely a bladder problem. She definitely thought it was IC! So she suggested a urologist..So will see what happens this week? I hope they have some helpful info for me?!
    My symptoms are severe, severe pelvic pain, the pain worsens when I need to go to the restroom, lately the pain is always so I have no idea really what food is irritating me more? Ive changed my diet though, leaning more towards the IC diet. I already ate very healthy before, it sucks to see even some certain healthy things (like fruit) you cant have! I also just had my period two days ago, and I have never been SO sick in my life. For two days I was stuck in bed. I have my normal pelvic pains X20 because of my menstrual cramps as well!! Ive had these pains for a month now. When I first got them I went to the ER, and they did a pelvic exam they only offered me Vicodin they didn't have any answers. My parents pushed for an ultra sound fearing it may have been a cyst of some kind! The ER refused because they didn't believe it was? My parents were very unhappy with the ER doctor because I was in such severe pains! So all I have at the current moment is Vicodin for when the pain is to much to handle like it was during my Period!
    I have heard of the prelief, also something called Aloe or something? My mom was looking into that for me! Have you heard of it before?
    I did try some straight blueberry juice, and pear juice with water, it was pretty good actually. Just said that I cant have vitamin water seems I drink that, and it aggravates me.
    The crazy thing is for the past 3years I have been seeing my doctor, and she kept telling me all these symptoms were just bladder, and yeast infections. She kept giving me the same medicines over, and over. They would help for say a month, but it all would just end up coming back, because clearly it was something adding up to more. As my boyfriend says it seems those three years were just leading up to this big explosion that I'm going through now!!

    I appreciate your response! I look forward to more information, and speaking with you all!!!!

    Thank YOU!

    Leave a comment:


  • earthlady
    replied
    Rubes- Thanks for posting your story. I was also one who was scared to death at first and made a point of reading all the success stories here and enjoyed hearing from the 'veterans' for advice. I've been in remission for several months now but still visit the forum often.

    Samantha - try reading the diet section here. There are a lot of tips on what juices people have found that don't have added irritating ingredients. Pear juice and blueberry juice seem to be the most tolerable. I found that I was ok also with apple juice if diluted and also found a cold pressed watermelon juice that was ok for me.

    Leave a comment:


  • Rubes
    replied
    Hi Samantha!

    I'm so sorry to hear about your diagnosis, but you have come to the right place. There is a wealth of information on these forums, and the people here are so supportive. Are you on any medications? What are your symptoms? I think depending on your pain (how and where you feel it), people can offer different suggestions. In case you haven't discovered it yet, Prelief is a great aid for those of us with IC. It helps neutralize the acid in foods, so it makes certain foods more tolerable for certain people. (For ex, I can drink coffee if I take prelief, but no amount of prelief would make OJ ok for me. Conversely, certain people may find that it makes fruit tolerable, but not coffee - it all depends on your body, and sadly, most of that is trial and error). I also use Prosed DS, which is a urinary analgesic and antiseptic that really helps with bladder burning and urgency.

    Please post back and let us know what you are going through. There is also a section on the board called "Newly Diagnosed with IC" where you can post for support. Hang in there!!

    Rubes

    Leave a comment:


  • samanthareiche
    replied
    New to IC

    Hello to anyone who might be able to help, or support me?

    My name is Samantha. I just recently have discovered I have IC, and I'm so new to it all! I feel alone because know one understands the pain I'm in! You all seem so strong, and have discovered how to live with it! TEACH ME! PLEASE! I find my issue being the diet. I been wanting juice, but every juice seems to be something I cant have.?

    Leave a comment:


  • Jinny Jean
    replied
    this is wonderful! SO glad you are feeling good and have life back. It was people like you that kept my hope alive when I was so depressed and low... I am so glad people keep coming back to tell us all they are doing well. It means so much to those who are crying and suffering!!!!!!!!!!!!!!!!!

    Even though I am doing very well right now too. I still come on here at least 3 times a week so that I can maby give hope to others to. I will always try and be one of those people who stays in contact even if I am doing fine.

    Jenn

    Leave a comment:

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