My Adventures in Incontinence: A Crohn’s Companion Tale

Living with Crohn’s disease is a journey full of unexpected twists, and recently, I’ve hit a new milestone: navigating the world of incontinence. Hydration has become my best friend and worst enemy. If I don’t get at least 64 ounces of fluid a day, my body starts to rebel—cue several days of feeling like I’ve been steamrolled. But staying hydrated while being unable to transfer myself and living solo (my caregivers only come during the day) has introduced a whole new challenge: managing a perpetually full bladder.

Now, if you’re a man, you’ve got the option of condom catheters—simple, wearable, and sleep-friendly. But for those of us without the right anatomy, the options are… let’s just say, less than ideal.

Enter the PureWick system. In theory, it’s a brilliant invention: a non-invasive external catheter for women. I’ve used it during several hospital stays, and while I appreciate the concept, the execution leaves a lot to be desired. Keeping it in the right position is a battle, and the suction system? It just can’t keep up with my flow. Not to brag, but I’m apparently too powerful for that little device. Every time I’ve tried it, I ended up with a soaked bed. So much for that idea.

Next up in my internet deep dive: a pair of backless underwear with a hip harness and a front-attached tube. Stylish? Maybe. Practical? Not so much. Reviews warned of tubes popping off, overflow disasters, and the requirement to sleep on your back (a hard no for me). Plus, the backless design is a nightmare for someone whose bowels like to throw surprise parties. I don’t have the right anatomy to maneuver the tube safely, and the risk of pinching or worse is just too high.

So, I’m back to the basics: waterproof bed protectors and pads. Originally meant for bowel issues, they’re now pulling double duty. But when you move around in your sleep as much as I do, staying on top of those pads is a gamble. I’ve been wearing Depends to bed for years, but they just can’t handle the volume. Why hasn’t anyone invented a hybrid product that combines the best features of all these devices and actually works?

I feel like the fear of leaks is the main reason a condom catheter equivalent hasn’t been created for people with female anatomy. But surely, with all our modern tech, we can do better. If anyone out there has ideas, hacks, or products I haven’t tried, drop them in the comments—I’m all ears!

Until then, I’ll keep searching, keep hydrating, and keep sharing. Because if there’s one thing Crohn’s has taught me, it’s that we’re stronger when we face these challenges together.