Every IC warrior has a story. And this is mine…
It was Fall 2014, I was 28 years old and I had just begun my first semester at Gallaudet University in Washington DC as a student of Deaf Studies. It was a very exciting time. But I got sick with bronchitis which was nothing new since I have had acute bronchitis due to asthma my whole life. Evenon my three inhalers, antibiotics, cough syrup with codeine and steroids, I persevered and went to school (I wasn’t contagious). And then when I was finally feeling better in early October 2014, my dad died. I won’t go into great detail here, but he had been sick for many years and yet it was a huge shock. And I got sick with bronchitis again. His death was incredibly stressful for my family and it took its toll on us. One month after he died, one of my dogs died unexpectedly. She was 15 but still unexpected. In the course of one month, I lost two of the most important people in my life.
The ‘relationship’ I was in which wasn’t that great, to begin with quickly deteriorated because he couldn’t understand why I was sad all the time. He wanted me to just bounce back and be myself. So I stopped talking to him completely. And then my best friend at the time couldn’t handle my stuff so she disappeared from my life. I didn’t have time to dwell on the fact that my relationship and friendship were over because I was too busy trying to mourn my losses, all the while still in school. I came out of that semester with a 4.0 GPA. No matter what happens…I am determined to succeed. But that’s just the beginning of my story.
The new year came and went, I was in a foggy haze. Still trying to figure out what all just happened. I hadn’t been taking care of myself. In February, I thought I had a Urinary Tract Infection (UTI) so I chugged some cranberry juice and kept going on with life. But it didn’t get better so finally in March I took the time to go to the doctor for a UTI test. They tested me, gave me antibiotics and it was negative. I went back a week later, still in pain. Test again. Antibiotics again. Negative again. They did some exams and tests on me but couldn’t figure out why I was still in pain. They sent me to a urologist. Luckily, I went to a doctor who was familiar with IC. Many people with IC are misdiagnosed for years before they find a doctor who can correctly diagnosis them.
The urologist I went to seemed like a dream, in that if you are going to get the IC diagnosis then she is the doctor you want because she “specialized” in IC. At least that’s what she told me. But here’s the thing. She never expressed to me some things:
- How serious this illness was
- That this was a lifelong illness
- That I would need to change my life for this illness
- And then I would need to change it some more
- And then change it again
- And again…
- You get the idea
- She didn’t make me worry
I’m not saying she should have put the fear of g-d in me, but she should have made me understand that this was serious business. And I did not leave that appointment with the idea that this was for real. I thought okay, I have this illness…I am going to get this medication called Elmiron. Elmiron is the only FDA approved medication on the market specifically made to treat IC and therefore pharmaceutical companies take the gracious liberty to jack the price up to $10/pill, people with IC generally need about 3 pills a day. Which means insurance doesn’t want to pay for it. But with some fighting my insurance was willing to pay for it.
The urologist described Elmiron to me like so… My bladder lining was like swiss cheese and Elmiron was like Pepto Bismal for my swiss cheese bladder, so it would coat my bladder and help it heal. I thought great! I will take this medication and eat healthy and take care of myself and get healed! I will have this sh*t beat in 1 year tops! I said that to myself because either
1. I was delusional or 2. my doctor did not properly prepare me for what was to come.
Cause of IC: There was never a true cause found for my IC. But I believe it was due to extreme stress of all those events happening all at once. Prior to my dad’s death I had chronic migraines, asthma and yearly bronchitis but no issues with my bladder or even UTIs. But my dad’s death, dog’s death..plus ending of my both my relationships with my boyfriend and best friend at the time…all while being in my first semester at Gallaudet was likely just too much for my body to handle and that was when my IC was born.
I realize she is not the doctor I want to be with. She does not encompass the values that I want and need in a doctor when I bring to her the information that celery is good for the urinary tract because of the cellulose and she is puzzled by this information. I decide she sucks as a urologist and don’t want to see her again. I never go back to her.
My insurance company stops covering Elmiron. And my body knows it! When I run out of Elmiron…it felt like my body was peeing out the lining of my bladder in a mix of razor hot acid mixed with glass. Which makes sense because Elmiron was creating an artificial bladder lining.
After that I started taking Marshmallow root, which is a natural replacement for Elmiron because it is able to coat the bladder. And it did a pretty good job. However, my body stopped liking it after awhile and built up an allergy to it. So I had to stop taking it. Where do you go from there?
I learned to control my IC with food. What I put in my body is what heals or hurts my body. I am not on any official medications of my bladder as of right. When I need antibiotics I take them. I was literally on antibiotics due to bladder infections for 3 years because my bladder just couldn’t. I am doing much better now. I have found that a keto diet aids in keeping a balance in my body…for my IC at least. Carbs and sugar allow the bacteria in my body to grow out of control. I’ve been through this a few times. I will stop eating carbs/sugar and be good to go for months on end. And then start eating carbs and then it will all end and I will be back on antibiotics.
This is not for everyone…this is just what I have found works for me. This also includes the IC diet…it’s not easy. But it keeps my bladder healthy that’s for sure.