Rising Above your Circumstances, living with IC

Living with IC.

Interstitial cystitis (IC), also known as bladder pain syndrome (BPS), is a chronic inflammatory condition of the submucosal and muscular layers of the bladder. The cause of IC/BPS is currently unknown and the condition is regarded as a diagnosis of exclusion.

I'm positive even some of my dear friends didn't know this about me. And that's okay, it's not a hot topic that we could just go out and be like, 'hey, so do you have any diseases I've never heard of?" And it's not really a meeting with your girlfriends once a month salon talk either.

So, maybe you have it. Or something you don't want to discuss. I'm now leaving that door open. Because this is only part 1 of transparency coming your way.

What is IC? Webster the Internet defines it as described above.

I explain it as the most bipolar bladder ever.

I went through years of testing, poking and prodding to finally having the book thrown at me for diagnoses of Interstitial Cystitis. Now, is more commonly diagnosed. 

But in 2002, it was not only difficult to diagnose, but there wasn't much known about it, at all. I did a lot of research in the library, on the Internet, and rang up over $18,000 dollars in medical debt.

I had 3 bladder distentions, (stretching your bladder) CT scans with dye, MRI's, ultrasound after ultrasound and yet NOTHING could take away the pain I had. NOTHING.

I have a list of the proper diet, and foods to avoid. I have books. But nothing could teach me, what time would.

Here is foods I cut out to begin my personal trial and error.

Tomatoes (this includes pizza sauce, salsa, ketchup... anything with tomatoes)

Chocolate 

Alcohol

Nuts

Citrus

Caffeine 

Spicy foods

I cut it all out, for 1 month to see progress.

And then, I added one in at a time for a week. Now my personal list I cut out is:

Tomatoes (I can moderate this, and limit)

Alcohol (Moderate and limit)

Citrus is an absolute no go. I can have NO citrus whatsoever.

Spicy foods (might as well call the doctor)

The above are what effects my bladder.

This should be proof enough that every body is different. You have to do what works for you.

Living with IC has so many challenges. I have to have more water than the average. Where as you should have your body weight divided by 2, I have over 100oz everyday, no excuses.

I know how to home remedy an 'episode'(my bladder pain flare ups). Doctors strongly advise against baths, but when I'm in pain, a steaming hot water bath (no bath products) is how I can numb the pain.

Sometimes, I sit on the toilet for hours. I've had to eat there, drink there and read there before. 

Why you ask? Because what happens when you have IC is your bladder doesn't fully empty. And you have urgency. Then with that urgency you have to pee constantly, but nothing may come out but pain. 

Intercourse can be painful. 

It's a way of my life, and there is no cure.

I know what I can and can't eat, and what I can and can't drink.

In the last 4 years I've had less and less episodes of pain. And I attribute that to being healthy. 

Ever since I made a lifestyle change and starting losing weight, and really watching my diet (food intake, water etc...) I have had more pain free years, than counting each month on how many days I had pain free. Did that make sense?

I no longer have a urologist I have to see regularly. Because I can keep control of my bladder.

Pay attention to your body.

How do you get IC?

That's a question I've been asked many times when people find out I have it.

I don't think any one person is the same on how they have IC.

For me it was years of untreated UTI's (urinary tract infections)

I've had issues since the 6th grade. There were schools days spent in the bathroom, and never any doctors visits. Cranberry juice was forced on me only to discover Ocean spray cranberry juice was doing more harm than good with all the sugar in it.

If you have any concerns, see your doctor immediately. 

I don't know why I have this disease, but I have it. And what I've done with it, is used it as a platform to help others. I'm apart of several groups and we help and support each other. I love my IC sisters.

IC isn't the end. Learn your body, and mange it well. We only have one. Be Healthy.

These views are the views of Misty Scott of themistyscott.com

I have no medical training or legal advice to be given. If you need treated or diagnosed, please seek a licensed professional.