Interstitial Cystitis (IC) & Me

ic-ribbon-w-backlightInterstitial cystitis, (IC) is a debilitating bladder disease. I could explain the medical side of it again and again and it would not make you understand the disease, so I will explain it in layman’s terms. It is painful, very painful, with every movement I make, my bladder spasms and the more I move the more I need to go to the bathroom. Exercising is out unless I can drag a port-a-potty along behind me because just walking causes me to need to go to the bathroom. I usually go twice before finishing cooking a “quick” meal. I go to the bathroom in every store I go in. It is necessary for me to know where the facilities are and there are some places I won’t go into just because their bathroom is not up to my standards. I can usually sit for longer periods of time between urination if I remain still but if I am in the car, it jostles my bladder around enough to make us have to stop at least every hour and a half. Being at home, doing things while in my chair is my best bet to get things done, crafts, reading, or organizing bills, but don’t let my lap get covered up too much or I will have to get up quickly to make a mad dash to the bathroom. I’m not talking 10 times a day here, I’m talking 20 to 30 times a day. (The average person goes 4 to 8 times in a 24 hour period.) Even with my InterStims, the sacral nerve stimulators that are suppose to help control the bladder, I can still go 20 times a day easily. The InterStim that helps control the pain is working like a charm, thankfully. And I’m thankful for the InterStim that helps fool my brain into believing my bladder is not bouncing around in there because that is all it is doing, fooling the brain, it is not controlling the bladder in any way.

 Let me tell you about the flares, oh my goodness, they can break through the InterStim‘s work very easily, just let me put something in my mouth that is not on the diet sheet, like black pepper and I’m in bed for days. Or let me use a lotion that has something in it that my body can’t tolerate, or have someone with perfume on walk past me. It might be easier to say that everything that comes in contact with the body, whether through olfactory nerves, touch or ingestion, can cause problems. The skin is the largest organ of the body, so everything that you touch can possibly cause a flare. And once you are in a flare, it is like bees are stinging you from the inside. I, personally, usually lay in the fetal position and use a heating pad, try to sleep as much as possible to get through it, with pain killers of course, and stay away from any and all triggers for the duration of the flare, 3 days to 2 weeks.

Sometimes at family gatherings, someone will hug me and their cologne or perfume transfers to my collar, I know I’m in for a flare. Or someone lights up a cigar, those are the worst, I get away from them as quickly as I can and stay away from cigarette smoke as well, even though I’m a former smoker.

There is a diet that eliminates all acidic foods to help prevent flares but when eating at family or friend’s homes, you just have to really watch what you eat and ask, don’t be afraid to ask what the ingredients are in a casserole, I don’t eat anything with black pepper in it. I’ll say I’m allergic if they are not familiar with my disease, because basically I am allergic, it causes a flare and makes me miserable, so why indulge. No citrus, or citric acid, that eliminates a lot of stuff, you would be surprised, and no caffeine. This is a very short list, I’ll post where to find the diet sheet.


  1. Pingback: Baby – Daily Prompt | Invisible Illnesses
  2. Rachel Bob

    Thank for this description. Because you’re correct.. .you could explain the medical side of it again and again and it would not make you understand the disease. Even in layman’s terms, it can be difficult to understand. I’ve had IC for two years now and I continue to struggle to understand it. Every time I think I have it pegged- something changes and I have to learn more stuff about it.

    I write a blog called A Life Less Invisible chronicling my IC/chronic illness journey (including migraines).

    Liked by 1 person

    • Tina - Invisible Illnesses Blog

      Thank you for visiting my blog. You are right, IC is ever changing and hard to explain to those that have no medical knowledge. All we can do it try to help them understand and guard ourselves from the wrong foods and other triggers that might come along. I am going right now to look at your blog.

      Liked by 1 person

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