6 Things I Now Know About IC

"Life is a journey not a race."  I believe this famous quote describes the last 8 years I've lived with interstitial cystitis (IC)....a journey.   I like so many other patients was told at first I had a bad bladder infection then time passed and cultures came back with nothing.  Blood was in my urine but no infection.  Then I was scoped and had my bladder filled to the point of stretching it which is called "hyrodistention"....all without anesthesia which I do not recommend.  That's when the news came.... "You have Interstitial Cystitis. It's painful and life changing."  That's about all I remember of what the urologist said that day. Well I do remember practically crawling back to my car because the pain was more than I thought I could handle.  But it's amazing how much we can handle when we have to keep going.  So here I am 8 years later and honestly I'm better.  No, I'm not cured but I am better.  No, I can't chug a Diet Coke like I used to or eat chocolate on Valentine's Day or eat most seasonings but I'm better than I was 8 years ago.  I'm writing this blog for my IC friends who are still struggling and for the ones that just got that life changing news.   So I'm going to address 6 things I've learned in the 8 years that I've had IC:

1. Doctors don't have all the answers.  Until I got IC I believed you go to the doctor; he diagnoses you; and then he writes a prescription or a plan of action to get you well.  IC just isn't like that.  It's so multifaceted with symptoms that treatments can look very different from one patient to the next.  For example, one of the only FDA approved drugs for IC is Elmiron.  I have two IC friends who take this medication and have had great results.   I took Elmiron and by the end of the first day I was vomiting.  I vomited for 4 days after taking just one pill.   So treatment isn't going to be the same for everyone.  When I was first diagnosed my symptoms were so severe that most of the urologists I saw had no idea how to help me.  I finally went out of state at the advice of my gynecologist.  That's when I learned that doctors aren't sure exactly what causes IC; that for most patients the bladder isn't the only area of the body involved in the illness and that there were more than 20 different options available for me to try to help me get better.  In my home state at the beginning I was hearing Elmiron was the only option.  But there are so many more options.  Here are just a few of the treatments available:
   - Amitriptyline
   - Bladder Instillations
   - Desert Harvest Aloe
   - Diet Modification
   - Drinking Alkaline Spring Water in Abundance;(favorite = Mountain Valley Spring Water)
   - Elmiron
   - Heat & Cold pads
   - Hydrodistention
   - Hydroxyzine or Atarax
   - Pelvic Floor Therapy
   - Prelief
   - Reflux or Acid Reducing Medications
   - Urogesic or AZO Bladder
   - Valium Suppositories
   
   
2.  IC symptoms mimic those of a UTI or a bladder infection.   Once a urine culture is done and no bacteria grows out doctors will usually start to suspect IC.  (As a side note don't ever let a doctor put you on antibiotics without a urine culture supporting the need for them and which one will be effective.)  Once a urine culture has shown no bacteria most urologists will give you a diet where you eliminate foods they believe will hurt you.  Unfortunately many of them don't keep up with new research or information about IC and give patients a diet plan that may not help them.  There has been a lot of research done on which foods are more bothersome for IC patients. When I was first diagnosed another IC patient told me to stay away from the 3 C's:  Caffeine, Citric Acid, & Chocolate.  This is a really good starting point for the IC Diet but it probably won't be enough for most patients.  Here are 7 things to eliminate from your diet but I also recommend that patients download an app called the "ICN Food List":
   - Alcohol
   - Artificial Sweeteners
   - Chocolate
   - Coffee
   - Fruit Juices
   - Soft Drinks
   - Tea
   
   
3. IC patients can have very different symptoms.  Yes, we have some common symptoms:  urinary burning, swelling in lower pelvic around where your bladder sits which patient's nicknamed, "The IC Belly", and urinary urgency to the point of feeling like we need to urinate every 15 minutes.  But there are so many different symptoms that IC patients can have.  My first symptoms actually started with a feeling like I had been stung by 1,000 fire ants in the pelvic region.  So it was hard for me to tell the doctor what hurt.  I could tell it hurt in that area but I was hurting in multiple areas.   My lower back felt like I'd been beaten with a baseball bat.  My pelvic muscles hurt all the way to my knees but at the time I had zero idea what pelvic floor dysfunction was or that my pelvic muscles would affect muscles down to my knees.  My urine smelled like dead mice.  My urine also had so many white flakes in it that I can remember describing it to the doctor as looking like a snow globe had been shook up.   Urinating for me was always like peeing razor blades.  It was excruciating and there wasn't enough Urogesic or AZO in the world to cut into that pain.  But I have IC friends that have symptoms that I don't have.  One has thick mucus in her urine and and another finds sitting or long car rides extremely painful.  The important thing to remember if you are a new IC patient is to tell your doctor everywhere it hurts.  Leave nothing out!  IC is a giant puzzle with a lot of symptoms and the more the doctor knows the better chance he can help you find treatments that work for you.
   
   
4. IC patients often have multiple health issues.  Before I was diagnosed with IC I had chronic colon issues for years.  I had been hospitalized in high school with bowel issues and I had been seeing a gastroenterologist for years.  When I was 41 I had my colon removed.   Two years after that surgery is when I was diagnosed with IC.  I also had always had chronic allergies....seasonal, contact as well as medication allergies.   The list of the mediations I couldn't take was always embarrassing for me to rattle off to a doctor when he asked.   Over time though I read more and more about the commonality of other illnesses that IC patients had.  Follow this link for a list of related or associated conditions to IC:  https://www.ichelp.org/about-ic/associated-conditions/.
   
   
5. IC is not a rare health issue. I have so many people who comment to me about how rare IC is but it just isn't rare.  There have been many studies done on how many Americans have IC.  The latest one done found that up to 12 million Americans have been diagnosed with IC.  There are more women diagnosed with IC but anyone can get IC even children.  If you want to read about the recent studies done that came up with the numbers for women, men, and children diagnosed as well as the numbers per state go to ichelp.org/about-ic/what-is-interstitial-cystitis/4-to-12-million-may-have-ic/.
   
   
6. You will get better.  My biggest fear when I was diagnosed was never getting better.  But I followed the IC Diet, took Hydroxyzine daily, had pelvic floor therapy for years, and was willing to try just about anything doctor's suggested just on the hope that I would get better. Some of those treatments hurt more than they helped but it was a way to keep moving forward for me.  I researched daily and new treatments available or even suggested.    One year I had a hydrodistention done under anesthesia with an out of state urogynecologist who had a lot of experience treating IC patients.  It really helped push me further down the road to recovery.  I also discovered 3 years ago that I had over 20 nodules on my thyroid and my endocrinologist recommended that I have my thyroid removed because of I had a family history of thyroid cancer.  I had no idea at that time that getting my thyroid in a better place was going to improve my IC symptoms but it did.  

I could write a blog easily with 100s of things that I've learned about IC in the past 8 years.  But each person's journey is going to be different and these 6 are certainly close to the top of my list.   I know that none of us want to share anything so person as talking about their health with another person but I'm always open to talk to IC patients about this illness no matter what questions they have.  I've had my fair share of embarrassing conversations over this illness but the only way to move forward is to ask questions and get answers and pray daily.  I recommend that most patients review the ic-network.com for more information on IC and treatment plans and even new research.