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Living with IC (My story)

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  • Teri
    replied
    Welcome to the ICN Elizabeth
    Yep, there are a ton of caring people here on this site. Lots of information too....the coffee is gona have to go. I 'treat' myself on weekends and put about an inch of coffee in a cup, fill it up with water and that way, I get to taste some coffee without suffering anymore than I already suffer.

    I hope that you are looking for a uro who can help you with your pain. I have an appointment with another uro on Tuesday and this one I KNOW treats pain.....I hate leaving my current uro, I love him to death. But, he's not into pain medication and all treatments have failed on me so basically I'm 'just' a pain patient now. It's so hard leaving dr's, especially when you have bonded with them but sometimes we just gotta take care of ourselves and do what's best for us.

    Hope you decide to make us a part of your home We're a pretty close family and there's always an available ear

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  • ICNDonna
    replied
    Elizabeth:

    Welcome to the IC Network. I'm glad you found our site. You are so right that acids and coffee are pain triggers. But there are also many other foods that can be a problem for ICers. To find out about diet, you can scroll to the top of this page and click on "Patient Handbook."

    You'll also find information in the handbook about the various treatments and medications for IC. You have barely scratched the surface. At first, DMSO was painful for me too, but I found that if they instill lidocaine before the DMSO, it isn't too bad. I started with a series of eight and did need pain medications for several days after the first few. Now I'm on a monthly schedule and only have pain for a few hours.

    It can take time to find which treatment options work best, but most of us do get there and most of us do feel good most of the time.

    Sending healing thoughts,
    Donna

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  • ELIZABETH25
    replied
    My name is elizabeth and i am new to this website ---i have read some posts and i can feel the understanding and compassion for one another ----i was diagnosed with ic about 3yrs ago and still to this day i am scared i do not know what lies ahead i have been in pain for 3yrs and i have been on all the antibiotics you can think of .right now i am taking elavil and macrodantin ----i have tried the dmso treatments but could not not finish them they are to painful. the elavil and the macrodantin help a little but i still have the burning sensation 24 hours a day. i have noticed that my symptoms get worse when i drink coffee or eat acid foods --i am so glad that i know that there are alot of people who understand what i am going thru ...i pray that everone out there gets better ---i am glad to have found this website i know know that i am not alone -------god bless everyone and goodnight

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  • Paula
    replied
    I can definitely relate to all of your posts. I was diagnosed in February of this year. I've been having a flair up now for the last 3 or 4 weeks and it's combined with a stubborn yeast infection... The last time I had a bad flair up I also had a yeast infection at the time. Does anyone have any info on the connection (if there is one) on yeast infections and IC??? I'm taking Detrol twice a day which takes the edge off but I've been losing a lot of sleep at night due to the pressure and frequency. I can deal with the symptoms much better in the day.
    Any info would be much appreciated.. Hang in there everyone!!
    Paula

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  • Americangirllll
    replied
    Thankyou. Yes it was diagnostic Cysto with distention which was done under anesthesia. I agree that it was the reason for my 2 1/2 year remission. Yes I had a culture done on my urine, my URO automatically does them when I visit his office. The first infection after 1 1/2 year was definatley an infection, but the problems afterward's is my IC. When I get an infection it triggers my IC & it take a while for me to get through it. This time it took almost three months.
    thanx, A

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  • ICNDonna
    replied
    First of all, I'd like to welcome you to the IC Network. And I do have some questions. Was the diagnostic cysto done in a hospital with anesthesia and a distention? If so, it could very well be that the two plus years without a problem were brought about by the procedure. Are you having cultures done to confirm that it's infections you are having? The symptoms of IC are very similar to infection, but usually when a culture is done, there is no infection present.

    I think it's great that you are doing so well.

    Warm hugs,
    Donna

    Leave a comment:


  • Americangirllll
    started a topic Living with IC (My story)

    Living with IC (My story)

    I was diagnosed with IC after the birth of my Twin Girls Thirteen years ago. My first problem ever with my bladder was when I was 3 months pregnant with them. I was only 21 & I got a UTI. I had never had one before and I was totally shocked, because I never even had one with my first pregnancey 2 years earlier. Everyone kept telling me that now that your pregnant you will start getting yeast infections. I never had a one, but I will tell you I would trade IC for a yeast infection anyday! At least they can be treated and cured! I then ended up with a kidney infection about a month after my girls were born. I believe that the cathader that I had when I had my C-Section was to blame for that. I got over the kidney infection and that was that,Well at least so I thought! until about six months later. I started getting UTI's, I had one after another for about a year or so & I finally decided to go to the Urologist that my MD refered me to. After telling him what I had been going through the last year with all the supposed infection's, he knew right away that I had IC, but he had to do the Cystascope first to confirm it. Well he was right. So while he had me on the table he stretched my bladder and filled it with some medicine. They affects of it lasted for at least 2 1/2 years. I got pregnant again with my fourth child about a year after my prociedure. I never had a problem with my bladder the whole pregnancy. I thought it was over. Well I was wrong again. I started having problems again not to long after I had my baby. Which now was about 11 years ago. I had maybe 1 to 2 flare up's (which were diagnosed by my uro as infections,) in a year. I have been doing real well, I still get the occasional UTI, but As long as I drink alot of filtered or bottled water, I'm ok. I also have to watch what I eat. I can't have anything with lemon juice or slices in it (like lemonaide) which really stinks because I love the stuff! I also can't have lime or anything made with cranberries, They are the worst! I also can have things like sodas and the occasional beer as long as I get enough water. I had an infection about 3 months ago & I have been having flare ups off & on since, but I think I am over it now. Once Im over it I usually can go for a year or so without any problems, as long as I get enough water. I know For myself, Water is the key.

    I read alot of your post's and I sympathize with every single one of you because, I know what you are going through. Although I dont think my case of IC is as bad as alot of your's, I know that when you have a flare up, that it is the most excrusiating pain that their is.

    Sincerley,
    A
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