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What to do about this flare?

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  • lbcharel
    replied
    Hi good wishes from me ,I have had a bad flare up all this pass week its hard I could cry but doesnt take the pain away,Im on Elmiron as well and Sab-opium and ant-depessions as well, take care of yourself ,Im going for dmso at this hosp this coming tues hope it helps have had that treatment for 10 years or more take care

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  • runningshoe
    replied
    I want to know how you are doing? Please check in with us! I hope that you are better.

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  • Sunnydawn
    replied
    Hi Sara,
    I know the hopelessness you feel. But the way your feeling will get better, you have to believe it. Force yourself to feel better emotionally. Rent Will Ferell movies, he is hillarious, laugh out loud and you will begin to feel better. Have you tried natural suppliments to coat and help heal the tissues of your bladder/urethra lining? Suppliments and a reduction of stress have saved me, they might help you while you wait to see your doctor.
    I take:
    4fish oil capsules a day (coat irritated bladder)
    Glucosamine (helps rebuild tissues)
    MSM (helps rebuild tissues)
    detoxifier ( I take daily detox)
    all of these are at high health
    drink plenty of h2o and try stretching, tums and an ice pack to help take that edge off
    *maybe try a supplent that will regulate hormones
    Say a prayer or yourself, your going to be okay! As far as your man is concered I understand what its like to have your man not understand, theirs no point in getting upset so be happy hes there for you and leav it at that. you must tell yourself it's going to get better and it won't be like this forever , you have too. watch comical movies to life your spirit, when I laugh I feel better.
    God bless and all the best

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  • Kathleen Philli
    replied
    Try to stay calm and prioritize

    So sorry to hear of your troubles, like many others here, I have long and lovely periods of remission, but it always comes back. It is so frustrating because no doctor can tell us why we flare or what to do to prevent it. Stress is a big flare trigger for many and your upcoming move may have at least contributed to your relapse. With respect to your boyfriend, most men just don't get it, because very few ever suffer in that area the way women do. Remember, your health, both body and mind are the most important things you have. You must put yourself before any relationship, or job or anything else. Your #1 priority must be to regain your health, and everything else will fall into place after that. When I have a flare, I like to start a journal and write down the treatments I have tried and those I would like to try, and document what is working and what is not. One new thing I am trying now is a rescue instill. It is just xylocaine and heparin. You might want to look into trying some of these. I also failed DMSO. So far, I have had no pain with the rescue instill so I will try at least 6-8 weeks of these. Also, If you have called a urologist's office and told them you are in so much pain that you are crying and sleepless, and they still put you off for several weeks, then you should get out the phone book, and try to find a doctor who is compassionate. That long of a wait is not acceptable. You are in crisis and should be seen on an emergency basis. One final thought, I agree you should be checked for a UTI, but, I also think you should see if you could find a doctor who will try a course of antibiotics. This is somewhat controversial, but studies have shown that because of the compromise to the epithilial surface of the bladder and its coating, IC patients are much more vulnerable to even a few bacteria that could have been introduced during sex. Most uro's will throw away your specimen without culturing it unless it is teaming with bacteria, because the assumption is that a few bacteria are just a contaminated specimen, and are causing you no harm. The specimin should always be submitted for culture. If you are not allergic and tolerate antibiotics fairly well, it would probably be worth a try to do a course of a broad spectum antibiotic like levaquin. If that does not help, then you can move on to the next thing. I have also started taking the Desert Harvest Aloe caps. I think they are helping. (No miracle cure, but any help is better than none). A few things to try. And I agree, totally follow the diet. Drink nothing but spring water until you start to improve. And believe in your heart that you will get better, and you won't stop trying until you do.

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  • Danica07
    replied
    Happy Birthday! If it makes you feel any better its also my birthday and i am in a flare and expected to be at work in 4 hours. I would definently get some pyridium and take that three times a day with lots and lots of water just relax at home and watch something on TV it will help take the focus of your pain. When you feel a bit better try maybe going to a physical therapisst for it or maybe get an instillation. Somethings got to work!

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  • runningshoe
    replied
    Oh I feel your pain. I was in remission for over 10 years and them bammm it IC hit in Feb. I was in total denial for two weeks before I dragged my sorry sore $##@%!! into the Uros office and begged for pain killers. I still weep about it. Why did it come back? We will never know for sure but I do believe that if you were in remission once then you will probably be able to get these symptoms under control again. The body wants to heal. I understand your fear and your pain. Please go to the dr. Please lean on this network. You are not alone and you must believe that the pain will pass. I ordered the cd for women with pelvic pain from the IC shop and it has been a great comfort to me. Call your family and friends and tell them you need help. Hang in there!!

    Leave a comment:


  • kadi
    replied
    Hi Sara,
    #1 priority - get checked for an infection ASAP. ....

    If there is no infection
    Talk to your doctor immediately about stopping the Lexapro. Some patients find antidepressants helpful, some find they can trigger the IC. If you started a new medicine, then noticed a surge in symptoms, there's a very good chance that it's your culprit.
    I'd stop the colostrum as well, since that's another new thing you've tried this week.
    Make your diet ultra bland. Review the "Understanding Diet & IC" article in the Patient Handbook linked at the top of this page.

    It may take several weeks to ease your bladder, so try as much as possible to be calm. I know how awful IC feels, but I can tell you that I have active IC, managed with medication, diet & physical therapy, still have some level of symptoms every week, BUT my life is not ruined. I work full time, exercise, go out with friends, etc. Try as much as possible to control your thoughts - "This is temporary", "I will manage for now", "I will find a treatment that will help". Picturing your whole life destroyed will not help your symptoms, your emotions or your relationship with your boyfriend.
    Replace each negative thought with a simple calming one, then distract yourself as much as possible.

    Hang in there, wishing you luck at the doctor's appointment,

    Leave a comment:


  • Myca
    replied
    Totally with you Houston. I was in remisson for years and then it would come and go. Hydrodistensions helped for months at a time. Long months. And then the flare came back and the hydros stopped working. I guess I abused them. I have been in a constant flare since September on my honeymoon. I have tried another hydro, some instills and most recently Botox with no results. I have not worked in over a year because I just don't think I could hold a job at this point. It's difficult to concentrate and function when you are constantly on pain killers and calling in sick and getting no sleep. And I don't exactly want to go into a new job telling them I have a life altering, crippling disease. It IS tough to go one every day, especially when every day never seems to get any better. But hang in there, that's what everyone keeps telling me. It just keeps getting harder. I'm only 26. I don't even have kids yet. I wonder if pregnancy will help or hurt sometimes. sorry, just ranting

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  • HoustonGirl
    replied
    Donna

    Thanks for your reply. I am going to my primary care doctor to see if it's an infection, but don't think it is. I am taking prelief without food to see if that helps any. I also started taking colostrum. This is on a whim as I don't know what helps me last time to go into remission. It pretty much happened spontaneously, just like my symptoms coming back again. I just took another pain pill, but I hate taking those. I'm praying that this is an infection, but it feels more like just regular, flaring IC. I am also going to see if going off the Lexapro helps. If I don't get better in a few days, I'll know that it's not that. I tried to explain it to my boyfriend this morning, and he says he understands but I don't think he does because he keeps asking me over and over again if I feel better. When I was dealing with this everyday, I did a pretty good job of "just dealing with it," but I'm not used to this pain anymore and I don't know how I'm going to deal with this, be able to work, and keep a smile on my face. Anyway, just venting... Thanks.

    Sara

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  • ICNDonna
    replied
    Try thinking back to when you went into remission --- what treatments did you try that might have contributed to relief of your symptoms. Are you following an IC diet? That can be very important.

    Definitely see your urologist as scheduled, but you really should be checked today to be certain you don't have an infection working. Your primary care physician should be able to do that for you.

    Before you move, I suggest you ask your current physicians for suggestions on doctors near your new home.

    Donna

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  • sbaker
    replied
    Im sorry that you think this will totally ruin your life and your relationship with your boyfriend. There is one thing Ive learned through living with IC and that is that I HAVE TO GO ON. I have to pray and have faith and I can have a nice, life, I may be in pain going through the motions, but I still can have a life.

    I hope you learn how to deal with this and get in to see a doctor fast.

    Leave a comment:


  • HoustonGirl
    replied
    Feel like my life is over

    Well, it's almost three am here in Houston and I'm up in pain. I tried calling my boyfriend who I have been planning on moving in with, and he didn't get what I was trying to tell him. I haven't suffered like this since I've known him, and he's not really good with problems like this anyway. He doesn't get the severity of the situation and how my life will be totally ruined by this, as well as our relationship. There is nothing I can do about this and I will now probably have to quit my job and go back on disability. I will not be able to work tomorrow for sure and I've already gotten in trouble for missing days, so this is not going to help my standing with them. This the worst possible thing that could happen to me right now. Tears...

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  • mary124
    replied
    Happy Birthday! Sorry you are flaring! Like the others have said make sure its not a UTI - maybe you can drop a sample off at the doctors office? I just came out of a nasty one myself last week, it was no fun at all. Went to the doctors because I did thought it was an infection, but noooo. the doctor which was my family physican upped my medications a little temporarily and gave me some antibotics for just in case--I didn't need them so I didn't fill it.)
    Figure it had to be something I ate, been pretty good but who knows??!!
    Anyway, hope you feel better, we all know how it feels. Lay in bed, take some pain medications, have your heating pad and a good book or movie.

    Leave a comment:


  • mom_in_ma
    replied
    Houstongirl,
    First, make sure you don't have a UTI. Second, if you just started Lexapro, it's likely that you did so because of stress, anxiety or depression. Those in and of themselves can cause a flare. Stress is my biggest trigger and it brought me out of a year long remission as well.

    Know that you are not alone and the fear you are feeling is completely normal. I too was in remission for quite some time and came out of it, unfortunately, in late December. However, we have both been in remission before...we can do it again!

    When I start to flare, I immediately go back to a strict IC diet. I also am not afraid to take anti-anxiety meds (better living through chemistry!) and I do so when I'm suffering with IC. I also take tums...they work like the baking soda trick, but they taste better. Revisit the things that worked for you in the past.

    Take care and hope we are both feeling better soon!

    Leave a comment:


  • amartaingirl
    replied
    happy birthday

    happy birthday..and it will pass. it always does.

    Leave a comment:

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