Monday, July 25, 2011

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!


Sarah's Short Takes said...

I am the EXACT same way you are! Food doesn't really trigger my IC at all. I avoid caffeine at all costs, cranberry juice, and orange juice. I also very much limit my alcohol intake. That's really it, nothing else seems to affect my IC at all. I am SO glad to meet someone else that totally understands this! I am criticized by other ICer's too, and have also been told I am faking it because I can eat almost whatever I want. I also agree that it makes it even more difficult though, because then I really have no way of controlling certain flares.

The Valcat said...

I wanna hug you, I think you are my IC twin lol. Are we friends on FB??

Invader Zee said...

Reading this, I feel like I wrote this!! I avoid acidic fruit/fruit juice and alcohol, but nothing else bothers me. I get really annoyed by people insisting you HAVE to do the diet...if it works for you, great, but it doesn't work for all of us, just like meds and treatments help some people, but not all. My major problem is PFD...when I have frequency (which is my main symptom), 95% of the time I feel like my bladder is being pushed on, rather than being irritated. I'm going to look for you on facebook!

Susan said...

This is awesome and diet does not work for me either. SO TRUE!! Very good article!!

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