I Have IC and I Eat Pizza

Never judge an IC patient by what is on her plate.

IC is never talked about enough openly, but when it is one of the top topics is the IC diet. The IC diet is real, the IC diet can help a lot of people, but it is important for the public and newly diagnosed people to realize that the IC diet does not help everyone. A lot is still unknown about IC. The more research I do, people I talk to and doctors I meet with the more I am becoming convinced that there are almost two types of IC. The first type seems to have a lot to do with what food and drinks are consumed and actually come in contact with the bladder. People who suffer from a lot of food triggers seem to suffer from this type and are greatly helped by the IC diet.

The second type, the type I seem to suffer from, has little to do with food and a lot more to do with nerve signal dysfunction and muscle dysfunction in the bladder and pelvic floor. I literally can get shooting nerve pain in my bladder that comes out of nowhere and makes me have to pee several times an hour.  Sometimes it comes without any triggers, other times I feel it has stress or hormonal related triggers, but rarely does it have any food triggers. It almost seems at times that I have Fibromyalgia localized to my bladder and pelvic floor. While this is still my own theory and not medically proven, I won't be surprised if someday more is known about it on a professional level.

I tried the IC diet once very strictly for three months. If you don't know what the IC diet is, it is a very low acid diet. I lived on water, pear juice, plain chicken, Alfredo sauce and vanilla ice cream. I even replaced my beloved chocolate with carob chips (ugghh so not the same). What did I get as a result of this three months of torture? No pelvic pain relief, no improvement in bladder symptoms...basically nothing. 

I have told more than one doctor who has diagnosed me with IC that the IC diet did not help me. The answer I was given? It doesn't work for everyone, so if it doesn't work for you, don't be on it. That is totally fine by me. I like pizza, chocolate and other banned IC diet foods. 

What Can't I Have?

Once I got off the IC diet, I did some testing with top IC no-no foods. I will not consume the following items as they seem to make my bladder feel weak and crampy:

• Orange Juice
• Cranberry Juice
• Dark alcohol (red wine, dark rum)

That's basically the extent of it. I can eat chocolate, tomato sauce and even buffalo wing sauce with no consequences. I will say that I do limit my intake of coffee and alcohol. These things are not the best for even the healthiest of bladders and people. I will never have more than one cup of coffee in a day. I also maybe only drink white or light colored alcohol on average maybe twice a month at a birthday party or nice dinner out. Gone are the days I had in college when I thought it was okay to drink three days a week.

The Benefits of Having IC without many Food Triggers:

• I have more of a selection available to me in restaurants
• No one notices me having odd eating habits in public
• I can have chocolate to make a bad day feel better

The Negative Aspects of Having IC without many Food Triggers:

• It's hard to control my symptoms. I feel like if certain foods were causing the pain, I could avoid them to avoid flares. There is not much I can do to avoid flares, it is kind of like a guessing game.
• I get a lot of shooting nerve pain from sitting for too long by having this type of IC.
• It seems to anger some other IC patients.

Let's explore the last bullet point. For some reason, some (not all or even many, but some) IC patients who live and die for the IC diet have lashed out at me for eating pizza or downing a drink. Some are concerned about my health. Others think that I am faking having IC (umm...hello, who in their right mind would pretend to have this bizarre condition?!). 

I think it is important for us all to remember that IC is still a medical mystery in a lot of ways. I don't have all the answers, neither do any of the other patients and doctors don't even have all of the answers yet. Due to the mystery factor of IC and how it effects no two people in the same way, it is entirely possible for one IC patient to be able to eat pizza while another can't. I think it is important for all IC patients or anyone with a mysterious female condition to support each other. We are all batting for the same team and everyone's situation has ups and downs. I have met people who need to stick to the diet strictly, but all of their symptoms are limited to the actual bladder. I can eat more freely, but I have nightmarish symptoms of my pelvis and urethra at times. Everyone has something and everyone wants a cure.

In my opinion, the IC diet was a great discovery and if it works for you, definitely stick to it. It can be life changing in a positive way for some people. My point of this post is not to put down the diet or anyone on it, but to reach out to the people who it doesn't work for so that they know they are not alone. Don't let anyone tell you that you don't have IC if you have been diagnosed with it just because you can eat a slice of pizza. Mangia!

Maybe This Isn't As Good As It Gets

Don't be pessimistic, it's not your style.

So I recently found a new doctor and had a Urodynamics test done. The test was not very fun, but they say it can show the doctor a lot of information about how your bladder is working. I am scheduled for a hydrodistention towards the end of the month. I have heard of the hydro being used for diagnosis, so I was unsure at first why I was having one when I already have a diagnosis.

As I went through a lot of the forums and support groups that I belong to, I realized that a hydro also works as a treatment for many people. A hydro temporarily blows your bladder up like a balloon  so that the doctor can look at it better, but it also stretches it in the process. It will definitely cause some post-op pain for a few days after, but once you recover some people actually have reduced symptoms for a few months. Like so many IC treatments, the reduction in symptoms is not equal for all people. Some people may experience no reduction while others can live a better quality of life for six months or more.

I have kind of grown used to the status quo life I have with my IC. Some days I feel great, some days I feel like death. Usually a long and active day out or a night of cocktails will lead to a flare, so I pick and choose when I will do these things knowing that the pleasure of a normal life may lead to pain after. I had decided for a while that this is as good as it gets. That life with IC has to be like spinning a roulette wheel every single day. Sometimes there is no predictability. Once in a blue moon I will get away with a night out with out a flare, but wind up in a flare even if I spent most of the day at home with a heat pack. My type of IC has a lot more to do with muscle spasms and nerve issues than with food triggers, so I don't have many ways to control it food wise.

The thought of the hydro has given me the mind set that maybe this isn't as good as it gets. There may be a way to have reduced symptoms for a longer period of time. Although I will not enjoy the urethral pain I know I will have for the two days following the procedure, it is worth it for me to try. It is worth the gamble. If there is anyway I could have less symptoms during my upcoming bachelorette party, wedding or honeymoon that would be awesome. I know there is no guarantee, but I am glad I am trying. Most other doctors have said to me"this is just your life now". I had grown tired of trying new things. This new doctor and new idea have given me the drive to keep trying to have a better quality of life.

I have learned to do a lot of things through the pain. Sometimes I may even do things I shouldn't or do things that hurt with a smile on my face because I want to live not just simply be alive. But in the end usually even the most fun days end with me curled up with a heating pad at bed time. I thought that was as good as it gets, but I am confident now that it can be better.

The bottom line: never stop fighting for improvement, no matter what your condition. Stay strong. xoxo.

"You have severe symptoms"

Most people would be horrified if a doctored looked them in the eye and said "you have severe symptoms". I on the other hand was thrilled on Friday when a doctor looked at me and said "You have severe symptoms of IC and your bladder behaves in a way that is not normal for a 27 year old". I was thrilled b/c I have known this for a long-time and have been suffering on and off for a long time and it felt good to hear real medical professional agree with me.

Even though I have had an IC diagnosis for a little while now and a PFD/V diagnosis for even longer, it has been hard to get doctors to take my symptoms seriously until now. Many doctors would say things such as "you have IC  but it's not that bad" or "take Elmiron and you will feel better" (oh if only it were that simple).

Before diagnosis it was even worse. It's hard to pick the worst thing that has even been said to me. It's sort of a toss up between the ER doctor who said "You are making this up to get pain pills" (even though I was in 10 pain and told him that I wanted no pain pills only an answer), the ER nurse who told me I was "banned from the ER for all matters related to my bladder or pelvis because nothing is wrong with me" or the Urologist who called me a drug addict for being on 30 mg of Elavil (a mild old school anti-depressant with a max. dose of 150mg---not even a narcotic). 

After going through all that, it is like wedding bells to hear someone tell me I have severe symptoms. This new doctor has me scheduled for all the tests and procedures I have researched so hard but all other doctors denied me. This doctor gave me the proper referrals for physical therapy. This doctor knows that IC is a real illness. This doctor knows that IC chicks are in their own category and can't just be lumped in with 70 year old men who have slightly overactive bladders.

It's been over 2 years since the first time I felt a debilitating symptom of IC, over 6 years since the first time I had a urine culture come back negative for infection, but still have high WBC and over 13 years since my first severe UTI which only seemed to lead to other issues. But finally, after all this a doctor finally agrees with me that IC causes severe symptoms. So you see, what can be the worst words that one person could ever hear, can be the best for someone else.