We're Never Cured - Do We Get Worse/Better?

[futurehope]

What is the progression of this ailment (IC)? Does it ever go away for good?
Do you continually get better or worse or do you have flares/remissions?

Are flares worse over time?

It seems odd that the cause of this is unknown.

[SandyRN]

Some people get worse, some people get better. From reading these boards I see that most people do get better after treating IC with the diet, and a combo of meds...whatever is right for that particular person.

It is odd that there isn't a common cause the researchers can nail down, but they are out there working on it, so hopefully our children, and our children's children won't have to suffer like we do!

[SandyRN]

ps...I thought about the word 'ailment' and don't think that applies to IC...IC is so much more than an ailment. It's a debilitating, painful disease that can rule and ruin many lives.

JMHO

:)

[Katrina]

Very few patients progress with IC. There is often something else going on that contributes to those that do. Most people do get better. I know of people that would say that they are cured and even more that have stages of remssion.

Currently doctors see IC as an injury...something that can happen from multiple different reasons...infections, abdominal injury or surgery, stress, diet, and some other things seem to contribute. There did not seem to be one cause when patients were surveyed but something that did connect us what the symptoms, an injured or irritated gag layer of bladder, and that most had something that seemed to begin it for them.....with the exception of those that seem to have it in their family.


My flares are way better with time!!!!! :)

[kadi]

Even those of us with IC in the family, something seemed to trigger it off. I quit my bc pill & developed IC right after. My mom quit her HRT and that triggered it for her...

Over the past 3 years, I have gotten better (with the help of diet, relaxation, exercise,& various medical treatments).

[ICNDonna]

Only a very few people with IC get worse over time. Most are something like me. I do well most of the time as long as I stick with my diet. Hydrodistentions have been a huge help for me so when the symptoms return and won't go away, my uro schedules me for another hydro.

I actually am better now than I was at diagnosis, largely because I know what foods and drinks I need to avoid.

Donna

[curlycue]

There is light at the end of the tunnel. I thought I would never get it under control but with the right meds and diet, you will be ok, not 100% but ok. Good Luck

[futurehope]

SandyRN,

I'm truly sorry if it sounds like I'm minimizing the impact of this "affliction".

I tend to call instances of problems "diseases" only if it's cancer or something caused by a germ or virus like malaria or strep throat or something with a known progression.

On that note, I also call arthritis an "affliction" even though it is quite debilitating. I also call my postural orthostatic tachycardia an affliction (on another forum) even though it has disabled me.

So I want you to know that it is my choice of words and does not reflect at all on the impact on others or their suffering. That is my choice. I use "affliction" or "ailment" on my own medical conditions. And they are truly disabling.

I don't even call my "GERD" a disease. I use the above term on it as well.

Maybe, one day, when I know more about the cause and progression of IC, I, too, will call it a disease. But for right now, for me, it does not fit my definition. I do not mean to offend anyone, ever.

I've obtained my wording from the bible which says:

For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;

Whatever I'm going through now is "but for a moment" compared to eternity.

[SandyRN]

I didnt mean to sound offended, but it's hard to convey actual 'feelings' on the web, which is why I put the :) at the end of my post. Maybe it's not a disease, OR an ailment, but whatever the term it has taken a good portion of my life away. So, whatever name/category that would fall in is not important, its coming to grips with it, trying to get on with life, and pray my daughter doesnt come to me with symptoms one day! I have good days and bad days, but I remember a time not all that long ago when every single day was a good day, at least physically....