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When Life Comes to a Halt During an Interstitial Cystitis Flare-Up

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I live my life going from bathroom to bathroom – “bathroom hopping” all day long, sometimes over 20 times a day just to pee a tiny, burning drip. The slightest bit of urine in my bladder is uncomfortable and painful and the urgency is so overwhelming that it takes over my entire life until I can feel like I’ve relieved myself.

This is every day, all day.

My three sons and everyone close to me know where to find me if I suddenly disappear. I am always in the nearest bathroom.

It often interrupts my stride and concentration on whatever it is that I’m doing. Everything stops at that very moment and I have to run to the nearest bathroom.

Leaving home really sucks now because I like the cleanliness and comfort of my own bathroom. I’ve developed an anxiety of public bathrooms over the years and it has gotten a lot worse. It’s a huge ordeal for me since I spend half of my time in there.

Not only have I encountered disgusting, gross, smelly bathrooms, I’ve almost been grabbed in a gas station bathroom by a man crouched down in a stall next to the toilet. He jumped up as I walked in and then lunged at me. I ran out the door, almost peeing my pants. I absolutely despise gas station bathrooms and that incident made it worse.

One time while camping way out in the middle of nowhere in the desert I had an IC flare up where I was peeing blood and I was trapped in a friend’s motorhome bathroom all night long with a pillow on my lap trying to get some sleep, in pain, crying and medicating all the way until the next morning. We were far away from home or a hospital and sitting on the toilet medicating with a pillow was all I could do.

The next morning my friends and their children needed their bathroom so I had to somehow pull it together and get out of there! I had to smoke a lot of weed, drink a ton of water, take Vicodin and pyridium and wait until I felt that overwhelming urgency subside so I could get off the toilet. Then I started vomiting in the truck all the way to the hospital.

Another incident happened on a three-hour drive home from San Diego on an extremely hot day with my grand puppy. I usually bathroom hop from Starbucks to Starbucks to and from San Diego since their bathrooms are usually pretty clean. This day I was having another IC flare-up and I really wanted to get home bad. It was a burning hot day and I couldn’t leave Booty (my grand puppy) in the car, so we were trapped in a PetSmart bathroom for hours. I was starting to have anxiety because it was going to get dark soon and I thought I wasn’t going to make it out of that bathroom until closing time. I don’t see well at night while driving, so the thought was terrifying. I had to smoke a lot of cannabis, drink water and put a huge pad in my pants so I could feel like I could relieve myself if I really had to. We finally made it home, bathroom hopping from PetSmart to PetSmart with a gigantic pad.

I’ve had IC since the age of 19. I was misdiagnosed for 12 years as having chronic UTI’s and put on antibiotics. My immune system is weak now because of that. So I freak when I encounter a dirty, gross, smelly bathroom. Seriously – I’ll go pee near a bush somewhere before I deal with that. Or if it’s semi-bad I’ll hold my breath, squat and flush with my foot.

When I’m really busy and on the move it can be a real problem, like when I get stuck in traffic and I have to go now and there’s absolutely nowhere to go in slow-moving, bumper-to-bumper traffic.

I can’t hold my pee very long without developing cramps and severe burning pain that shoots up into my left kidney with an overwhelming gonna-pee-in-my-pants urge to go. It’s freaking hell.

This is my normal.

When I have an IC flare-up, my life stops. I’m on the toilet for hours with my pillow, water, medication and cannabis until I get control of the pain to either go to the hospital or bed.

A flare-up can happen at any given time with absolutely no warning at all, and being stuck in a public bathroom – or any bathroom for that matter –away from home is pure hell.

Stress can also trigger flare-ups.

Setting boundaries, doing yoga, meditating, creating (my hemp seed oil skin care products) and cannabis are helping me to have a better quality of life.

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Thinkstock photo via JackJelly.

Originally published: May 9, 2017
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