Sunday, January 20, 2013

Interstitial Cystitis ~ The Disease I Live With Every Day

This is a very difficult disease.  Even my own family does not understand why I feel the way I do.  Only the person suffering from such a problem understands the ramifications of the flare ups.  I am writing this blog post only to share with those who don't understand what exactly Interstitial Cystitis is and how it affects those like me.  Hopefully, I can get mine under control soon.  I was diagnosed in 2007 with this debilitating disease but even as a teenager in the late 90's I showed signs.   Don't worry as I have spared you of the gory TMI details, but truth be told we deal with way more horror than what I have shared below.

Since September 2012 I have been suffering with the most recent flare up, very excruciating for the first few weeks.  I spent an entire weekend and a Friday half-day in bed unable to be comfortable in any position.   I remember exactly how this particular flare up started; While at work it felt as if toxins were creeping into my lower back and internal organs.  A stingy, heavy feeling that just washes over your entire abdomen and back and then up your lower throat.  All you feel like you could do is vomit, but the vomiting symptoms aren't there.  There is no regular nausea that you would get with the stomach flu or the after-effects of indulging in too much alcohol the night before, no the room isn't spinning.  It just seems like you only have a mixture of chlorine, ammonia, and other pesticides festering in your body that you just need to get out.  Oh yes the typical bladder infection systems are there too, the burning when going to the bathroom, the stinging before and after the bathroom, the bloated feeling and extreme sensitivity to pressure but none of the typical bladder infection symptoms compare to the exponential IC flare-ups.  The ones that you know there are no medical cure for.  NONE.

Gosh, I remember when I was first diagnosed in 2007 the medical team really didn't have a clue.  Don't get me wrong my Florida doctor practiced what he knew but it was really only to cover up the symptoms.  There was no discussion of correcting the problem or trying to heal the bladder.  At no fault of the doctors, there just was not much to be known at the time.  IC happened to be one of those newer chronic conditions and unless you were in a certain research group you just didn't know.   At that time I was put on a new drug that still hadn't been released to the pharmacy, Urelle manufactured by Pharmelle.  A little blueish-purple M&M-sized tablet that tasted super sweet the moment you put it on your tongue but then would gag you a second later if you didn't chase it with water fast enough.  I would have to go to the doctors office every 3 days or so to pick up a lunch-sized brown paper bag of sample packaged Urelle tables.  It was like two to a pack or something silly.  I was on bed rest for a week just to get my bladder to calm down before I was released to go back to work.  I had no idea what had happened.  All I knew was just one month prior I was suffering from one of my recurrent bladder infections that just would not go away with prescribed antibiotics.   One night John and I decided to throw a PJ party for our friends, fun post-college stuff where we served slightly spicy cheese dip from a crock pot, rice krispie treats, cupcakes, and whatever appealed to the young twenty-somethings.  During the festivities I would get a little bit of a tummy ache so I would try to counteract by eating the opposite of what I just ate.  If I had just had sweet I better eat savory.  Nothing serious but I was still in the young and dumb student handbook of the tummy ailments stage.  After the party was over we went to bed my tummy was definitely worn out but I went right to sleep.  Sometime in the middle of the night I woke up with the sharpest, most riveting stomach pains I had ever had.  Oh gosh they burned and it gave me chills at the same time.  After some time they went away and I just pretended they never happened.  But over the next two months I suffered repeatedly again and again.  We found out later that I especially fell victim if I ate Caeser dressing, my only desired salad topping of choice.  I would be sitting on the couch watching tv or doing a craft project after dinner and then I would get the smallest tummy grumble accompanied by some heat.  Within the next twenty minutes I would be sweating and shivering at the same time.  John would do whatever he could to comfort me but there was nothing to be done but let it pass on its own.  

Early in the fall that year I went under a non-surgical procedure called a hydrodistention with cystoscopy where they take a camera inside you to look at the bladder walls.  Since John had to work, my future mother-in-law offered to take me in for this procedure as I would have to go under anesthesia.   So I signed over my paperwork so that the doctor could speak with her while I was still very much influenced by the sleeping drug.  Unfortunately, doing so made my unknown situation much more worse as stress is also a common factor that triggers flare-ups.  The doctor had explained to my future mother-in-law that he did not detect any tears or scrapes in the bladder wall and that was all that could be done for now.  Sadly, my mother-in-law took it to a whole new level by insinuating that all along I knew there was nothing wrong and that it was in my head and for the next two months she played the meanest games regarding my health and my future husband and so forth.  It only added tears, stress and heartbreak to a situation that my doctor or I did not even know how to handle.    At that point all I knew was that if I continued to take the medicine that was helping my bladder and myself function through the day I would continued to be ridiculed by somewhere very near me.  So I stopped, and somehow after several months of looking miserable from the outside and feeling disgusting on the inside my body started to get better.  Almost a year had passed before I was experiencing the burning again which coincidentally  happened to midst of summer all over.  From then on over the years of 2008 to 2011, I would suffer with awful bladder spasms for weeks at a time where I would then try to encourage the alleviation by popping a few leftover Urelle from the last prescription I ever filled.  

In 2010,  we moved to Texas and we were fine.  Who knows why, because we weren't on insurance and God knew we couldn't take on any doctor bills? Or possibly because John and I would go days without eating meat in our lunches and dinners?  Who knew? I sure didn't but I was thankful that I wasn't suffering.  Then in the summer of 2011 with record high temperatures soaring in Texas my pain started all over again.  I went to the local general practitioner and was treated for bladder infection that did not respond to the antibiotics.  Finally, the GP looked up what my old urologist prescribed and gave me a one month script of the Urelle.  My health insurance hadn't kicked in yet so I was going to pay out of pocket.  120 pills was going to cost me over $350!  Little did I know the prices would get worse over the years.  Luckily my health insurance was going to kick in like 4 days time, so I picked up the only pills the pharmacy had available (10 or so) and waited it out till the co-pay picked up the rest.    The weather cooled down and so did my IC but the spasms didn't stop when winter came.  

In the summer of 2011, only a few months before I permanently moved to Austin to live with my husband my suffering started again.  The same bloating, pain, back cramping, etc.  Nothing new, the same old pain.  Only I couldn't sit straight up in the office chair.  Great.  Back to the general practitioner as it was a tiny town and no urologists were around.  Besides even if there were some I didn't just want to be sent to a referral doctor.  I needed to do my research and find a doctor who was passionate about finding the correct balance for my body to fight this.   That is when I met Dr. Singh  also known as The IC King in Austin, Texas.  Thankfully he has been able to shed much more light on this disease (some call it a syndrome) for me.  He has helped me pin point some specific foods that trigger flare-ups (as to why I can no longer red sauce, a tomato allergy!) but more importantly he has helped me understand why and what I need to watch out for.  Now of course I am not cured and am still suffering from one of the worst flare ups that I have ever had but he has definitely helped me.  

Just this summer my husband was laid off in the round of mass lay-offs that hit the Game Developer Industry, the hardest city hit...Austin.  There went the health insurance again and unfortunately it meant that the one medicine that I figured out that literally cured my issue (or at least controlled my symptoms while readily consuming it) was going to jump to over $980 per month.  Yes that is right, the one thing that helps control this disease/syndrome is $1,000 a month because of our darn U.S. pharmaceutical companies greed.   So in September when the Elmiron (Pentosan polysulfate sodium) completely ran out of my system I was chucking down my throat two tablespoons of baking soda and 8 ounces of aloe vera juice every day along with using a constant 3xday supply of Pyridium.  Pyridium you shouldn't be on long term, it only covers the symptoms so that there is less suffering but what was I supposed to do?   Eventually I had to quit the baking soda as I was having dizziness and nausea just from that.  I have since learned to increase my aloe vera juice intake whenever I feel that my body has become too acidic.

Today I am still suffering from the same flare up but luckily for the time being I was able to get some Elmiron  in hopes that the bladder can start a healing process.  Of course it still requires  narcotic-like pain relievers when I am at my worst and constant consumption of aloe vera juice.  I don't think I will ever be able to stop drinking that nasty liquid.  I have to do 6 shots each day minimum and then chase it with a tiny sip of peach nectar to get the bitterness out of my mouth.  Regardless it is all awful and tonight I feel like my body is doing a 180 towards the darkside but I just have to deal.  I am now researching the great possibility of gluten intolerance and animal protein intolerance (which means a meatless diet) with the IC and Sjogrens, another syndrome/disease I have, both Auto-Immune Disorders.  There has been some small talk that gluten has been directly related to IC flare-ups, just in a different way than the typical GF individuals that the body has proclaimed its revolt.  In addition, I am hoping that will kick the mind-bending cramps that I get the week following the mensies, which have been off and on since 2006.  I know that it is not the typical problem for most women.

I included some links and more information below so that you get a better understanding what is going on.  But the biggest misconception in all bladder chit-chat that I would like to clear up is that cranberry juice is absolutely horrible for you.  If you have ever suffered from reoccuring bladder infections do not take the stuff.  It is way to acidic for your body and it will cause more damage than good.  

What I am currently researching regarding IC ??
- Gluten Intolerance?
- Sugar Intolerance?
- Alkaline Forming Foods
- Acid Forming Foods in the Digestion Process

"Interstitial cystitis is a chronic, severely debilitating disease of the urinary bladder. Excessive urgency and frequency of urination, suprapubic pain, dyspareunia, chronic pelvic pain and negative urine cultures are characteristic of interstitial cystitis. The course of the disease is usually marked by flare-ups and remissions. " ... "Referral to a support group should be offered to all patients with interstitial cystitis." ~ from


  1. Wow -- I didn't realize all that you have and continue to go through -- hang in there and prayfully something will happen for a cure. GOD knows and HE will continue to be there with you - remember I love you very much! Nannie

  2. Just read your blog for the first time. Love it. Angela you are awesome.

    I know this may sound off the wall but, try eliminating wheat from your diet. It is a main cause of inflamamation in the body. You could try reading "Wheat Belly" by Dr. William Davis. Of course I am talking about long term solutions. What do you have to loose ....except pain.

    Mary Altevogt

  3. Angela, I read your blog often and wanted to say thank you for the information you provided about the disease. I'm proud of you and hope many people found this information to be helpful and give them the courage to research further for a cure!

    ~Courtney W.