We Need To Talk About Sh*t… Bathrooming With Severe ME.
Major Energy Expenditure
Bathrooming in severe ME is for many patients the largest energy expenditure. Despite this, pwME often continue to push to utilize whatever method of toileting they currently utilize until they physically cannot. I believe much of this is due to a reluctance to discuss toileting as well as stigma against requiring bathroom assistance.
Therefore, this post aims to demystify bathrooming options for those with severe ME.
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Ensuite & Moving Towards The Toilet
The first solution most people will attempt when they become more severe is to stay closer to the toilet. This can mean using an ensuite bathroom if possible, or moving to the bedroom closest to the toilet. Other rooms besides designated bedrooms can also be used as bedrooms in order to be closer to necessities.
Pros:
Maintain independence
No need to buy new equipment
Access to running water
Cons:
Rarely able to get extremely close to toilet
Higher energy expenditure
No good fallback during a crash
Considerations:
Choose a location in your house based on proximity to fridge, sink, and toilet
Use an ensuite if possible
Use mobility aids like a wheelchair if helpful
Consider lying down after toileting before making the return trip
Have a backup plan for if you become completely bedbound (I recommend owning a bedpan as it is less expensive than a commode and requires less energy)
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Commodes
A commode is one of the most common solutions for toileting in severe ME. It can be placed in any bedroom and does not need to be changed after every use. It does not require 24/7 care but does generally take some help to clean.
Pros:
Good balance of independence and energy saving
Most can also be used as shower chairs
Cons:
Requires assistance
Still requires being upright during toileting (POTS)
Considerations:
Use in combination with a bedpan
Position the commode in such a way that you can elevate your legs on the bed while using it
Consider disposable commode liners for easier cleaning
Consider tilt in space commodes for showing*
*Note that a bath lift may be cheaper and preferable for some.
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Bedpans
I believe bedpans are seriously underutilized in severe ME. While they do take some getting used to, they require by far the least energy and once adjusted can often be used even in fairly severe crashes. They are also a very affordable piece of equipment and I personally feel every person with severe ME should own one as a backup.
Pros:
Minimal energy expenditure
Non-invasive
Maintains skin integrity
Affordable
Cons:
Requires 24/7 care*
Had a learning curve
Considerations:
When using for poop, if you are able (or with assistance), bring your knees to your chest. This will align your colon to eliminate fully.
Lie on a bedpad or towel that you can change regularly
Use bedbath wipes, wet wipes, or flushable wipes to clean well
Make sure you get a bedpan that is deep enough
Use a slipper bedpan for pee and a larger bedpan for poop
Return the clean bedpan within reach after each use.
Roll onto your side to slip the bedpan under if you cannot lift your hips.
*See unique solutions for work around
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Bedpads & Catheters
Bedpads and catheters require the absolute minimum of energy expenditure on the part of the pwME. However, they do have significant downsides regarding pain from catheter insertion as well as from skin breakdown. They also pose an infection risk. This is why I believe bedpans should be utilized early to increase familiarity and decrease the likelihood of needing catheters and bedpads.
Pros:
Minimal energy expenditure
Catheter allows for use at any time
Cons:
Skin breakdown
Potentially painful
Infection risk
Considerations:
Reusable bedpads are much more comfortable for sensitive skin. However, they are generally not suitable for poop.
Flick flow catheters should be utilized when possible to prevent development of incontinence
PureWick is an available external female catheter that may be preferable to some patients
A rolled towel will substitute for a pee pad if absolutely necessary
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Unique Solutions:
Composting Toilet
Instead of a commode, you can invest in a composting toilet. These are designed to be used in tiny homes or caravans with no running water. They use saw dust to compost waste and minimize odor. They require comparable energy to a commode with a bit extra of adding sawdust. The advantage of such a system is the ability to go much longer between cleanings which can be important if you do not have regular care.
Bedpan & Commode Combo
You can use a small bedpan sometimes called a slipper bedpan or a normal bedpan to pee in bed, and then dump the pee into a commode right next to your bed. This can save a lot of energy transferring back and forth to the commode. Especially if you have a small bladder. This can also be an essential tool if you really should be using bedpans but only have access to a caregiver some of the time.
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Handwashing
No matter what solution you use, washing hands is an important part of bathroom hygiene. Hand sanitizer is a good first line of defense, but will not kill spores like those in CDiff infections. If you are able to sometimes get to a bathroom, prioritize doing so when you have to poop in order to have access to running water.
If you are unable to get to a bathroom, try to have a caregiver bring you water to wash your hands with occasionally. You can also buy a portable hand washing station designed for the food service industry. These stations require only a stable surface and last many hand washes.
Finally, when you are not able to wash your hands, consider using a bedbath wipe to thoroughly scrub them beforehand sanitizing. This will still help to remove any invisible debris.
If you have MCAS / MCS and cannot tolerate frequent alchohol hand sanitizer, or if you struggle with handwashing, consider using disposable gloves when bathrooming.
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Period Products
Many pwME just use normal disposable period products. These have the advantage of being single-use items that do not require additional care. You can change them just as you would over a normal toilet over any of the options listed.
For those with sensitive skin, reusable felt pads are a really good option. They are WAY softer and last longer as well. I also recommend period underwear for the same reason. These items should be soaked in water as soon as they are taken off. Then can be wrung out and washed normally.
Simple microfiber rags are also a good option for periods in severe ME. These are very soft and can be bought extremely cheaply and simply folded and placed in your underwear. If you are bedbound, there is no need to have a period product that stays in place well because you are not moving.
The larger issue for periods with severe ME is the lack of access to bathing. Some solutions include:
-Bedbath wipes after every bathroom use or pad change
-Peri peri bottle used over bedpan or commode
-Handwashing station
Additionally, if you are bedbound, I recommend investing in a heating pad or hot pod (electric hot water bottle) as opposed to a traditional hot water bottle or microwave heat pack as these can be reheated in bed.
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Dignity vs Internalized Ableism
Conversations around toileting often focus on dignity of the patient. But the idea that someone should be ashamed to need someone else to clean their poop is inherently ableist.
Yes, cleaning poop is one of the least desirable jobs involved in caregiving and nursing. But dirty jobs exist everywhere. Able-bodied people are not made to feel guilty for using the toilet or throwing out leftover food but someone still has to work the sewage treatment plant and the garbage trucks.
The reason disabled people are made to feel particularly "undignified" or embarrassed by our toileting is that our society devalues and disrespects the nurses and caregivers who help us. So while we should certainly express solidarity and compassion for those who assist us, we should not feel guilty for needing the assistance.
I encourage all pwME to carefully evaluate how much energy they put into toileting. No one's life should revolve around their sh*t. Have a conversation with your caregiver about what can be done to decrease your energy expenditure on bathrooming. Look into commodes and bedpans. Acknowledge the unjust situation you are both in, but do not let it prevent problem-solving.
While some people have no assistance and thus have no choice but to devote all their energy to getting to the toilet, if you do have options, use them.
Finally, do not feel fixed into a single bathroom system. ME is a fluctuating disability and choosing the appropriate bathroom aids is just as important as choosing the appropriate mobility aids or appropriate activities for any given energy level.
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Everybody poops!
But for those bedbound or bedTethered with severe ME / very Severe ME bathrooming can often be a major source of stress, energy expenditure, and embarrassment.
But yall know I'm not scared to talk about real sh*t, especially when practical advice is needed. Questions about poop and toilet aids are some of my most common DMs and frequent support group topics as well. If you struggle with this you are not alone!
Bathrooming independently is often also deeply entwined with ableism to the extent that we do not even question its value. While using a bedpan commode, bedpad, adult diper or catheter may be uncomfortable, smelly, and messy, it should not be inherently embarrassing anymore than using a toilet.
The reason using these aids feels bad is that it taps directly into how disabled people are made to feel like a burden for needing assistance. Toileting is a bodily urge. You cannot just ignore it or put it aside. When you gotta go, you gotta go!
Our society devalues caregiving and caregivers just as it devalues disabled people. But these are also the few people we see daily, the people who care for us, and often because MECFS is so underrecognized our immediate loved ones.
No one feels guilty for using the sewage system or the garbage system. Dirty jobs are a fact of life. But dirty jobs that relate to disabled people are looked down upon, seen as unnecessary and pointless because "why do so much work to keep around someone useless."
So rather than an easily accommodated job we deserve to have done to meet our basic needs, toileting does become a burden on those closest to us.
It is essential that we are able to separate our understandable pain at burdening those we love from irrational guilt at having non-standard bodily needs.
Because Myalgic Encephalomyelitis doesn't care that society is unfair. Post Exertional Malaise or PEM doesn't care that we need (fairly!) paid caregivers for severe patients. Express your sympathy and shared injustice with your caregivers, but protect your health.
