Managing Interstitial Cystitis Flares (Interstitial Cystitis Network)

Are you newly diagnosed and confused about what IC flares are? ICN President Jill Osborne talks about the two most common types of flares, how to recognize them, manage them and, hopefully, prevent future flares.

Category:

Education

Tags:

• interstitial
• cystitis
• flares
• frequency
• bladder
• pain
• urgency
• pressure
• urinary
• painful bladder syndrome
• interstitial cystitis
• Jill Osborne

[supervixen404]

Am I the only one who's been in an INCREDIBLY HORRIBLE FREQUENCY/URGENCY FLARE FOR OVER A YEAR?????I'm guessing yes.

[icnjill]

@supervixen404 definitely not. My first year was horrible! It takes time and you have to try to figure out what could be irritating your bladder so badly?? Are you following the diet??

[gumpishelf]

Hi Jill. I just want to say that I appreciate so much what you are trying to do, which is to inform people about this awful chronic disease. I was wondering, with a flare up, (I just found out I have IC three days ago and have been on a very strict diet since then) can the flare up still last even though I am currently eating and drinking the right things for over 78 hours?

[icnjill]

@gumpishelf Yes, 78 hours isn't nearly long enough. You've got to be on the diet for atleast three months to really see a difference. The bladder heals very slowly!

[kessevil]

Of corse you should tell your doctor,but i told my uro that i have visible blood when i flare,and my uro did tell me that this can be normal with ic beacause of the blood vessels bursting,and i do not have hunners ulcers,i would never tell anyone not to tell there doctors,but i urge people not to panic about seeing the blood like i used to as this can be normal with ic!!!

[icnjill]

@kessevil Wow, I really disagree with your doctor. Visible blood implies that a fairly large vessel has been opened such as what we would expect in a Hunner's Ulcer. It's so profound that in a hydrodistention it's called a "waterfall" effect The smaller glomerulations rarely produce enough blood to be visible in the toilet bowl. I don't know what else to say except that every doctor that I've worked with always advises patients with visible blood to seek medical attention immediately.

[PeteyPoison]

I've lived with this dreaded disease for almost 3 years now and am going to attempt a gluten-free diet since I've heard it's helped many people. I notice that if I'm eating a lot of stuff with wheat in it, sometimes it depends, but it can give me awful flares and within a day or two I feel much better if I don't eat so many gluten products. Has anyone else tried this approach? Also, are there any other men out there suffering with this? It seems a lot of the info I find is more geared to women.

[moneysavingsahm]

I just wanted the victims of this horrible, painful and limiting disease to know that they are not alone. For me, it has taken over my life. It's to the point where I am no longer fearful of dying, because at least then the pain and disease goes away. I would love to know what causes this disease. Sometimes I wonder if my traumatic childhood and the related stress has something to do with my body reacting so harshly to itself. I would love to hear your thoughts. Please email me to talk!!

[moneysavingsahm]

I am 36 and I've had this disease since I was just 23 years old. Initially I suffered from frequency only. But as the years passed, I also started to suffer with: urgency & extreme pain, in addition to the frequency. I can void(go pee) as often as 50+ times in a 24 hour period. The best thing that I did was have my husband quit his job, so that we could have medical through the state and for me to go to a pain management specialist. I am now on full disability and my husband stays home with me.

[supervixen404]

@icnjill Yup been following the diet for years now. Still have soda and chocolate on and off but see no connection with that and my pain. I'll drink soda and be fine the next day but I'll drink water and feel horrible afterwards..just an example. That's why I dont think the diet makes a difference, at least not in my case. I've had this frequency/urgency feeling for over a year and a half. Longest break was 3 weeks a couple of times but NEVER have I felt like this for only hours or 2 days. :(

[89ngima]

@supervixen404 hi,i have been having the same problem for nearlya year now.

[89ngima]

@supervixen404 hi,apparently not.i have been having the same problem for nearly a year now.