MS Bladder and Bowels Advice

Why are toilet tips so important to those with multiple sclerosis? Frustratingly, bathroom issues and MS often go hand-in-hand, and if you plan to stay active with this disease, odds are you are going to have to deal at some point with potty problems, from gotta-go-NOW urinary urgency to why-the-hell-can’t-I-go constipation.

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Although I’ve had plenty of time to sit and contemplate these challenges—if you get my drift—it’s never been terribly convenient to write down the tricks of the trade since I’m rarely behind my computer screen when I get my best bathroom brainstorms (which I suppose is a good thing). But playing with a phone on the john? Score! So here they are, culled from personal experience, the Mayo Clinic, the MS Society and many other sources. And as always, if your issues are serious, contact your neurologist or, better still, a neurological specialist in the bowel and bladder department.

Number 1: Peeing

All lists start with Number 1, so it makes sense to begin there. When it comes to urinary complications brought on by multiple sclerosis, we get the full monty: urgency, hesitancy, leakage, frequency, retention, incontinence, you name it. How to best cope?

Drink lots of fluids (not just water). The Institute of Medicine recommends 3 liters (about 13 cups) of total beverages a day for men and 2.2 liters (about 9 cups) for women. I know it sounds counter- intuitive, but turning yourself into a prune is a) unhealthy (heck, just look at a prune) and b) will make any constipation you already have much worse. As soon as I wake up in the morning I down a huge glass of water to help on both fronts.

Okay, now limit your fluids… at night. If you wake up often in the middle of the night to pee (nocturia), cutting down your evening beverage intake is probably wise. Especially if it concerns multiple pints of beer. I’ve personally discovered Scotch to be a good compromise.

Avoid caffeine. Ever wonder why you always seem to have to pee multiple times in the morning? It’s probably that cup or two of coffee, as caffeine can irritate the bladder. Before road trips, I always skip my morning mug (although I’ll often seek out an espresso later in the day).

If needed, wear a pad or an “adult protective pull-up absorbent garment” (aka diaper). These come in handy when you can’t reach a bathroom in time. Or during those moments when you successfully reach the bathroom in time only to fumble with that damn button on your jeans just a wee bit too long. (On a side note, don’t you hate that whenever you sort of maybe need a bathroom, the urge completely ramps up the closer you are to a toilet?) Personally, I wear Depends for Men (they also make a Depends for Women). I rarely “need” them, but the added security relieves a lot of stress.

Always make a mental note of bathrooms in your vicinity. That means that when you get to a

restaurant, ask where the WC is before you reach DEFCON 1 and stumble down dead-end hallways or interrupt waiters taking orders at another table. Study that map at the zoo or amusement park. Identify the porta-potties at your fundraising walk or outdoor concert.

Think twice before you stroll blissfully by an available toilet. When traveling, my general rule of thumb is not to pass up an opportunity to relieve the bladder, say after lunch, when future availability is at all questionable.

Your friends and family should never discuss bathrooms without visually seeing the facility. Seriously. It’s just like the rules of Fight Club. First rule of Fight Club is—you do not talk about Fight Club. Do not tell me after we just passed a rest stop that the next bathroom is in 80 miles. Even if I peed 10 minutes ago, I will immediately have to pee again. Why does this happen? According to the National Institutes of Health, anxiety is known to trigger the need to urinate. So that means if I get anxious about the potential lack of a toilet, well, I’ll soon need said toilet.

Prescription drugs can help control urgency, which happens even when your bladder is not full.

According the National MS Society, “Management of the most common type of storage dysfunction is aimed at relaxing the bladder detrusor muscle so that a normal amount of urine may accumulate before the urge to urinate is experienced. This may be achieved by using medications such as Pro-banthine (propantheline bromide), Tofranil (imipramine), Ditropan (oxybutynin), or Detrol (tolterodine), all of which relieve spasms of the bladder.” Another solution that my MS buds have been crowing about: Botox. Injections in the bladder every few months can significantly tamp down an overactive urge to purge.

Dealing with urinary retention is critical to avoid urinary tract infections. Urinary retention is what happens when your bladder does not fully empty. The drug Lioresal (baclofen) often helps, but the gold standard is intermittent catheterization (IC for short). Everyone I’ve talked to has told me a) that it’s far easier than it sounds and b) it’s freeing. Cathing also helps prevent UTIs, which can seriously throw off your game.

One more trick I’ll use to wake up the bladder: while seated on the toilet I’ll slowly bend over, which puts pressure on my bladder, helping to “wake up” my need to urinate (lightly pressing on the lower abdomen does the same thing). I find this method works pretty well unless you are at a public toilet with an automatic sensor causing the toilet to flush every dang time you lean forward. That’s not only annoying, but it is distracting to others in surrounding stalls who must be thinking I’m trying to flush down a few kilos of drugs to avoid arrest before the cops arrive. Tom, a fellow Active MSer, recommends putting a dab of wet toilet paper over the eye to prevent repeated flush cycles. When finished, dispose of the dab so the toilet can go "back to being obnoxious for the next person." If I forget, I’ll just take off my shirt and toss it over the sensor! And bonus, since I’m in a stall, the strip show is totally private.

Number 2: Pooping

Do we haveta go there, Dave? MmmMm. We are nature’s creatures, and all of nature’s creatures have to poo at some point. Yes, even those of us with multiple sclerosis in the middle of an epic bout of constipation. Poop happens. I mean unless you are a sponge, a cnidarian or perhaps a parasitic helminth (and even they have to dispel microscopic waste), but let’s assume for all intents and purposes that you have a spine. What can be done to make the process easier?

Drink fluids. As I’ve said, the Institute of Medicine recommends 3 liters (about 13 cups) of total

beverages a day for men and 2.2 liters (about 9 cups) for women. Do it.

Get your fiber. We don’t eat enough fiber. According to the MS Society, “Fiber can be obtained from fresh fruits and vegetables, whole grain breads and cereals, and dietary additives such as powdered psyllium preparations.” I also eat a couple fiber chews first thing in the morning and half a fiber bar (about 10 grams total) before breakfast. Introduce your fiber gradually. If you eat 10 grams of fiber before breakfast on day one, you will be constipated, have a knotty painful stomach, and curse my name. You’ve been warned. And if you are planning to be away from the bathroom later in the day, resist the urge to up your fiber intake that one morning to “get things moving faster.” It doesn’t work that way. Things will move all right, but likely at the wrong time.

Work on a schedule. For me, things usually happen about an hour after eating breakfast. If I have an early day, I build that into my schedule—say eating before my shower, not after, to maximize my window.

Exercise. It gets more than just the body moving.

Use stool softeners (e.g., Colace) as recommended by your doc.

Reminder: certain medications might also stop you up. Common culprits include antidepressants or, brilliant, drugs used to control bladder symptoms.

Massage your abdomen nightly before going to bed. Studies have found it helps with constipation. Start just inside your right hip, and massage upward and over your belly button and then down to just inside your left hip. Knots? Gently work on them a little extra.

Drugs for relief? The National MS Society says that “enemas, suppositories, and laxatives can be used in moderation to facilitate a bowel movement. Continuous or regular use of laxatives is generally not recommended.”

A number of MSers hail the Squatty Potty, slogan: Poop Better. The Squatty Potty (or wooden StrongTek) works by slightly elevating your feet and legs, putting your body in a more natural squat conducive to bowel evacuation. And just an FYI, try not to use the phrase "bowel evacuation" regularly among friends. Unless of course you are also elderly, then chat it up. Poo and derivatives of poo are the top topics of conversation among seniors.

Visit a brick and mortar bookstore. I’m not making this up. According to Wikipedia, visiting a bookstore may have a laxative effect known as the Mariko Aoki phenomenon. “The term receives its name from Mariko Aoki, an otherwise little-known Japanese woman who contributed an essay in 1985 to the magazine Hon no Zasshi (ja) (which means "Book Magazine"). In that essay, she related how she came to the realization that for some years, walking around a bookstore inevitably made her want to go to the restroom. The editors of the magazine received reports of other readers who had similar experiences, and named it the "Mariko Aoki phenomenon.” Funny, it actually worked brilliantly for me one time. Only there was a major, major problem. Turns out the bookstore didn’t have a public restroom. Which leads me to my final point.

Accidents happen, even if you’ve done everything right. That’s life with MS, and it can happen with virtually zero warning. Don’t beat yourself up. I always keep an emergency pack in the trunk of my car for just such situations. Clean undies, wipes, lightweight pair of pants, and a large Ziploc bag for dirty clothes. I’m fortunate that it usually gathers dust, but it’s nice to have that “second” aid kit handy just in case.

The Toilet

At some point in your life you will have to purchase a toilet, and because of your MS this is the one time you don’t want to overlook the particulars of Thomas Crapper’s invention. (Actually, Mr. Crapper did not invent the toilet, not by a long shot, but he did help popularize it, and besides, it’s such a catchy last name. There’s evidence of toilet use dating back to the 31st century BC in Britain, and flush toilets were used five centuries later in the Indus Valley Civilization, which, for those of us who are not professional anthropologists, was located in the northwestern region of the Indian subcontinent.)

Seek out toilets with a “comfort” height of at least 16” so they are easier to sit down on and stand up from. Standard toilets used to be 14” high, way short. True ADA height requires toilets to be 17-19 inches, which can be too tall for some. If you short, you might need a stepstool for your tall ADA perch. And when you are in a rush to go, you don’t want to be climbing a stepstool, because you just might put the stool in the step. That’s not advised.

Consider a toilet riser or a seat riser. Toilevator (standard and grande) adds 3.5 inches at the base, leaving your commode pretty much looking standard. This is a good long-term solution. Other risers focus on seat modifications, raising the seat itself. These are more “institutional” looking, scream “disabled,” and are harder to clean. But they work enough, especially during challenging relapses and injury recovery.

Choose an “elongated” bowl, not round. This is important for MSers for a few reasons. Because of this disease, when I urinate I can’t always tell how “successful” I am. For me, the more auditory feedback, the better. When I’m sitting on a round toilet, my stream hits the sides—virtually silent. Great if you’ve got to take a phone call from your parole officer or ab person trying to sell you a water purification system, terrible if you want to know whether or not you’ve peed. An elongated bowl means more water surface area, and that means a better opportunity to hear the tinkle. Another plus to an elongated bowl: more room for those of us who perform self-catheterization. And finally, when you really gotta go and you are hustling to sit, there’s more forgiving surface area to land on if your rear is a touch off target.

If possible, select a lever for the flush that is mounted on the side, ideally on the side with the easiest access (often the side closest to the door). Why? If you are using a device to assist with walking, you’d like to be able to hold onto it with one hand and flush with the other. A lever that is on the far side of the toilet makes that more challenging. On that same note, a top/center mounted flush mechanism means you have to stretch over the bowl to reach it—a potential challenge if you are a bit tippy. And if your business happens to require a double flush (yay, success!) it requires the skills of a contortionist to reach while seated. Plus, where are you going to put the tissue box or scented candles?

The Clothes

If urgency is an issue in either the Number 1 or Number 2 departments, what you wear on your bottom half can be the difference between success and failure. To wit:

Belts are your enemy. Yes, they keep your pants up. And when you want your pants down, they still keep your pants up. And belts become progressively more challenging to unbuckle the more urgently you need them to unbuckle.

Also avoid multiple buttons and multiple tabs or, God forbid, a combination of both. There are clothes that have been specifically designed for wheelchair users and for people have trouble with snaps, buttons, etc.

Drawstrings have a strange way of being tied in a perfect bow until the moment you enter the

restroom when you discover it has been cinched tight in a perfect sailor’s knot, the kind that requires careful and patient undoing. And inevitably that knot will be your undoing when you have to pee.

If you can, limit your use of stretch pants. Just because you have MS doesn’t mean you have to

abandon all sense of fashion like me. My dear wife reminds me of this often, but at least she can wear a dress! I’ve debated going the kilt route, but there’s not enough Scottish in my past to justify clothing with a built-in air conditioner. These days I prefer the comfort and stretch of Gramicci gear. Or heck, fashion-forward gym shorts!

On the Road

I do have a few other tricks of the trade when it comes to going when you are on the go and an emergency strikes.

A portable urinal. For guys, a urinal like this one is an obvious answer, except when it’s not. (Also, for some reason, my body doesn’t like to play that game.) Women have the option of using a device like the pStyle but it hasn’t been tested by this reviewer, because duh. Complicating factors, it is meant to be used standing up, a nonstarter for some MSers.

A bedside commode. We originally purchased an affordable bedside commode for times when I was too weak to get to the bathroom, say during a bout with the flu that knocked out the use of my legs. But then during a trip to national parks during a government shutdown, many public bathrooms were shuttered or trashed. So we took this baby along and although it was never needed, the peace of mind was invaluable.

A portable toilet. The newest tool in our potty arsenal is a full-on, flushable, fully contained portable toilet. We upgraded from a bedside commode to a more robust toilet for a few reasons. Namely, during a pandemic, public bathrooms are not an option, especially since I am slooow. And when visiting friends, going inside to use the facilities isn’t really an option since their bathrooms are not handicapped accessible. And finally, I’ve been to too many small towns and old restaurants that don’t even have accessible bathrooms despite the ADA.

A change of clothes. In each car, we take along an emergency “Dave had an accident” pack. The contents: replacement protective underwear, a lightweight pair of pants, and a pack of wipes. It stays in the back, usually gathering dust. Indeed, it might go years unused. But when you need it, you really, really need it. Again, a preemptive strike so an accident doesn’t ruin your day anymore than it already has.

So there you have it, my best advice for coping with multiple sclerosis urinary and bowel problems. Do you have a great tip? Send it my way: dave@activemsers.org. Just be sure to wash your hands first.