interstitial cystitis

Bean615
Bean615 Posts: 132 Member
edited October 2 in Introduce Yourself
i was diagnosed with IC back in 2005. I went on a strict diet went on the medication Elmiron and my symptoms went away. As the years went on i became forgetful of what i was eating and my IC. Now, 6 years later i am having another flare up. i have not had one in 5 years. I am having a hard time dealing with it. The worst thing is--I NEED MY COFFEE. anyone else dealing with the same thing i am? Any suggestions or advice?

Replies

  • Khaos01
    Khaos01 Posts: 7
    I'm not sure what IC is exactly. I have a cyst problem as well..I get cyst out breaks on sensitvie hair lines...like my neck, arm pits, panty line. They hurt like heck and I have found nothing that helps them. I've had them surgically removed, I've been on all different sorts of meds and creams and body washes. Sometimes they are so bad, I cant hardly walk, sit, or lift my arms up over my head. They really are taking their toll on me. They make me feel ugly, and insecure. The worst part of it...as the years go by, they are getting worse and worse!!

    I've be dealing with these for almost 11 years now...I wish I could help you out with good suggestions on what to do...but I dont! I'm sorry!! I just wanted to share with you the problem that I have. If you ever want to talk more about it..friend request me!!!!
  • shrek1970uk
    shrek1970uk Posts: 83 Member
    i was diagnosed with IC back in 2005. I went on a strict diet went on the medication Elmiron and my symptoms went away. As the years went on i became forgetful of what i was eating and my IC. Now, 6 years later i am having another flare up. i have not had one in 5 years. I am having a hard time dealing with it. The worst thing is--I NEED MY COFFEE. anyone else dealing with the same thing i am? Any suggestions or advice?

    Are you able to drink decaff coffee?
    Or have you tried redbush tea?

    These are the only 2 'hot' drinks that I can tolerate :sad:
  • michelleion
    michelleion Posts: 122 Member
    I had some horrible flareups of cystitis about a year and a half to two years ago, and the most recent was around December 2010 - it usually flares up when I'm dehydrated, so plain water and lots of it is definitely the way to go in my case! I'm terrified of it happening again, so try to be pretty good with this. I'm sure the occasional coffee won't hurt as long as you're not overdoing it?
  • Bean615
    Bean615 Posts: 132 Member
    i think i am going to try and stick with the whole foods and have one cup of coffee a day. yesterday i went without coffee and had the worst migraine all day. it is like i was quitting cigarettes all over again! thanks for the tips. also im going to try and find low acid coffee i think i saw it somewhere.
  • ljharris34
    ljharris34 Posts: 1
    I know it's almost a year after this post was originally made, but I wanted to mention http://www.icnsales.com/. They have both low-acid coffee and coffee substitutes that might be worth a try.

    Hope your IC isn't too bad right now - I'm having a mild flare-up now and it's frustrating!!
  • peggyyawn
    peggyyawn Posts: 2
    I am dealing with an IC flare after being symptom free for months. I was just getting back into exercise and was trying to add some jogging. I was fine for several weeks and then the flare began. Don't know if the exercise has caused the flare or not but find it strange that I was fine for several weeks before the flare started. Anyone else have an experience with this?
  • placebomonkey
    placebomonkey Posts: 104 Member
    Ive been a victim of this for years since my teens and it really does ruin quality of my life :(. Ive lost jobs over it and countless hours of sleep.

    Petcat - I'm a keen runner and I find sometimes long runs can cause a flare up , probably more down to becoming dehydrated than the actual running. Make sure you are well hydrated before and after jogging.

    Ive always felt quite alone dealing with it till I noticed these posts , feel free to add me all x
  • hannahhughes85
    hannahhughes85 Posts: 2
    Have you tried cranberry extract capsules? You can get them from most health stores, they have pretty much saved my life haha. Used to get a flare-up almost every month, now it's only about once or twice a year!
  • kaervaak
    kaervaak Posts: 274 Member
    You could try baking soda capsules to counteract some of the acidity in the food you eat, but overall, you're just going to have to be careful about food.
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