As the late Joan Rivers would say, “Can we talk?”
I’m referring to bathroom hygiene.
Now, before you say, “E-w-w-w-w-w-w-w,” I raise this because it’s one of those topics that no one wants to discuss in public, but that presents some very real challenges for those of us with scleroderma.
To wit, what do you do when your hands don’t work right—because you have digital ulcers, like me, and/or you have flexion contractures that freeze your fingers at right angles, and/or your wrists aren’t flexible and your skin is too tight and your fingers are sore or just not that strong anymore—and you have to clean your bum after taking a dump?
It’s not easy, and it can be downright frustrating.
I’ve discussed this with occupational therapists over the years and gotten a few helpful suggestions.
Here’s what I’ve found to be most effective. There are three essentials:
- Soft, strong toilet paper. Forget the one-ply stuff that supposedly saves money but disintegrates as soon as you tear it off the roll. You just need three times as much to do the job.
- Flushable toddler wipes. My favorites include aloe. You can buy these at any drugstore or Target, they’re inexpensive, and they make the whole process of cleaning yourself up much quicker and easier, especially if your fingers are weak or sore. Just be sure to check that the package says safe for sewers and septic systems. You don’t want to clog up your plumbing.
- Antibacterial hand sanitizer. These products have gotten a bad name, lately, because of worries that we use so much antibacterial soap and cleanser that we’re encouraging resistant strains of bacteria. But I’ve checked with my infectious disease doc, because I cannot use soap and water on my ulcer bandages without risking more damage to my skin beneath the dressings, and he assures me it’s fine. Hand sanitizer that I rub on and let air dry is a major part of my hygiene routine and a reliable defense against ulcer infections. Again, I favor products with aloe that don’t dry out my skin.
And here’s my method: Make a wad of toilet paper, large enough that you have a good grasp without exposing your fingers. This essentially provides padding for fingertips. Top it with a wipe. This gives you additional protection plus a gentle moisturizer for efficient clean-up. Swipe and flush. Repeat as needed. Then clean your hands with the sanitizer.
Sometimes, if you’re dealing with a bigger job, it helps to have some disposable vinyl gloves on hand, to be sure you keep your fingers clean.
If you have trouble pulling the wipes out of their plastic packaging, try cutting the package apart and placing the stack of wipes into a ziplock bag, the kind with a plastic slider at the top edge (I find these easier to open and close). This is also a good way to carry some wipes with you, in a purse or carryall, when you are out of the house.
If anyone out there has some additional tips, please share. I’m a fanatic about hand hygiene, because I’ve had far too many infections over the years. We all have to use the john, and those of us with scleroderma—or any other medical challenge that limits manual dexterity—have to be creative when it comes to bathroom habits. It’s not just a matter of staying healthy—it’s a matter of staying independent.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com