Monday, May 7, 2012

Living with IC

Awhile back I officially announced that I had Lupus. Before that, I had announced that I have Rheumatoid Arthritis. Today, I get to announce yet another problem, Interstitial Cystitist. I’m sure I’m not spelling it right but I will try to fix that later.
IC is a painful bladder disorder that has no cure. IC is a chronic pain disease that causes pain on a constant basis. Not only does it cause my bladder to be in constant pain, it causes me to have to constantly feel like I need to go. All the time, 24/7 I feel like I need to go. The symptoms started back in Dec, so I am not really sure what it feels like anymore to not have to go to the bathroom.
Not only do I always feel like I really need to go, but I have constant pressure on my bladder. Anyone who has ever been pregnant has the feeling that the baby is sitting on her bladder. Ok well imagine your 10 yr old sitting on your bladder, all day, and no matter what you do, you 10 yr old will not get up. That’s me. Constantly it feels like there is something pushing on my bladder.
I know that this sounds completely ridiculous. I mean seriously, of all places to have problems, My Bladder? It seems like such a gross but function organ. You rarely hear of people with bladder problems. Well now I have a serious one.
There are many other problems with IC, but since I am sure that no one really wants to read any more details about my ability or lack of ability to pee, I will just say there is more.
In January, February and March I had ultrasounds to see what was going on and eventually I went to a urologist. Now this is an experience all to itself. The normal patient for a urologist is an older gentleman having prostate issues. I looked weird being the only under 40 female in the room, but oh well.
A couple weeks ago I was in the hospital having some procedures done to determine how far long this case of IC is and another procedure to determine if there was anything they could do to help. The bladder stretching did help the pain some after I recovered from the pain of the actual procedure.
Now comes the fun part. For those patients with severe cases of IC, a strict IC diet must be followed to the letter. Luckily I do not have a severe case, I am in the medium range, but I do not want to get any worse. So it is now my time to see what is on my daily list of foods and drinks that I really should eliminate or at least severely reduce.
My number one offender on the list is diet soda. I love Diet Coke. There is just something about the harshness and the bubbles that I just love. Well my love of the bubbles has been part of what is bothering me. So now I am working on a plan to slowly eliminate the foods on the IC list that are known to cause bladder pain. Rome wasn’t built in a day and there is no way that I can just wake up and give up everything that I have been eating and drinking. I will take my time and go through everything that is a part of my life and see if it does bother me or not. If it does bother me, then I will eliminate it.
My first big task before I work on elimination anything else is going to be to get rid of the diet coke in my life. My goal was to get down to one a day at home and one a day at work. Which compared to the normal 12 a day, that is a miracle.
I used to be super big into drinking tea so I am going to use that as my way to get out of soda. Once I am confident that I no longer crave soda at all, then I will move on to another item that is causing me problems.
I don’t know what items will definitely cause pain and what definitely won’t in my bladder, but I am going to have to just keep experimenting and get it right.
Thank goodness that the drug that I am on for Lupus and RA does not have any interaction with the drug that I am on for IC. The drug that I am on for Lupus and RA is actually working a little right now, although I am not really expected much relief until it has been in my system for 2 months. 


  1. sorry to hear this, leland! i know you're a tough cookie, so i know you're going to be a trooper with this new illness. my sister has it...severe case. you're the first person i've heard of having it since she was diagnosed. as her sister watching her live with this illness, it breaks my heart. i hope that you are successful with changing your diet!!! i know you'll kick its butt!;)

    1. Thank you so much! Its nice to know I am not the only normal aged person who has it. I feel so weird going into the Urology office surrounded by old men!