MS Really Enjoys Hitting Below the Belt

John Connor avatar

by John Connor |

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heat, quiet, hotel, covid-19

I didn’t file a column last week due to medical reasons.

It’s a perfect excuse for a patient columnist — we don’t need a dog to blame for eating our homework. The multiple sclerosis dog is more than happy to put us on the floor; in my case, even three of my limbs still work.

Now, I really don’t want to write about the following, but as I’ve committed to a relatively honest diary of living with MS, I can’t avoid it.

Be warned: It’s a sh*t subject!

Just when I think I’m on top of an MS problem, it bites me in the behind. In this case, literally.

I’ve written a lot about this problem recently in the columns “I’m a Big Boy Now,” “After Hitting Rock Bottom, I’m on My Way Back Up,” and “Up Peristeen, or How to Beat the Blockade.”

Along with urinary tract infections, it’s been the bane of my life. MS seems to really enjoy hitting me below the belt!

I thought that the worst was over when I started using the Peristeen anal irrigation system. Then one weekend, it failed, sending me into a tailspin. I’ve found too many easy puns associated with this subject. Hey, it needs the light relief! (Stop it.)

I got a new Peristeen system, and both the system and I seemed to be back on track.

I got overconfident.

I went off to work last Tuesday thinking I’d done everything correctly.

Big mistake.

By the time I got back from London, I had to go straight to the little boys’ room. (In my present situation, it’s the purposely designed big ol’ boys’ room.)

The good ol’ boys’ room, when you’ve got MS. (Photo by John Connor)

It was midnight.

I wouldn’t emerge till noon.

For a while, I seriously wondered if I’d make it. My last act would be as an Elvis Presley impersonator. I was taking it seriously, meticulously following the Stanislavsky method.

I know that by now, I should be intimately aware of what effect MS has on this particular system. But I really wasn’t. MS seems to be excessively good at creating constipation. In my case, that’s aided by some of the medications I take, primarily Modafinil. Without this particular therapy, I’d be living in an MS-induced brain smog so bad that I might as well move to Delhi.

It’s a matter of balance that is notoriously difficult to maintain when you’ve got MS.

The one benefit of this new phase is that I don’t just spontaneously erupt.

In the early days of my diagnosis, I was queuing at a petrol station counter. Was there a toilet? As I was given a rambling explanation of why it wasn’t for customers, it proved unnecessary. I waddled back to the car. Luckily, I was heading for home — only 10 miles to go! Unluckily, my family also was in the car. It was an apt metaphor for our future journey with MS.

OK, this is the graphical and technical bit, feel free to skip it, as the punchline’s at the end.

The stools had descended too far to use the anal catheter — yes, there was more than one! So, I attacked them with suppositories.

When I’d seen a doctor at the beginning of getting the Peristeen system, he’d described it as “a compacted stool.” These ones were so compacted they behaved and (sorry) felt like they were covered with Chobham armor. Well, it is British! They laughed at the suppositories and chucked them out!

Battle was joined.

Very slowly, a plan emerged.

Suppositories for a bit, make some room, then douse with water from the anal catheter.

As it was a 12-hour battle, it was no skirmish.

Eventually, victory.

I spent the next week trying to get my body clock back to normal.

I was suffering from the little-known condition of wet room lag!


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


FB avatar


It's always seemed somewhat ironic (in a horrible way) that when we are little tackers being toilet trained our entire worlds seem to revolve around bodily functions relating to urine and faeces, and then MS comes along and can take us right back to that time again even though we are adults. Apart from those of us who have "bladder and bowel problems" caused by our MS, I really don't think many people have any idea how much the malfunctioning of these bodily functions can rule (and ruin) our daily lives. Fortunately mine are not too severe yet, but I know it is only a matter of time as my MS progresses. MS - the gift that keeps on giving................

Tom Halterman avatar

Tom Halterman

Big fan of the trifecta- disease meds and an extreme love of cheese. When asked. I respond with "I can drop a cinder block."

M.S. avatar


Boy oh boy, does it hit below the belt. Legs don't work - chair bound. Bowel and bladder issues. Bowel issues kind of control my life at this point. Handicapped restrooms in public places really are just large stalls for employees to use as a dressing room or moms to take their children fir a group potty break. I have to transfer from my scooter onto toilet - most toilets too low to the ground and I cannot transfer up onto my scooter seat. AARGHHH!!

Mary E. Marros avatar

Mary E. Marros

Me too, not from modafinil (which I take) but from Aubagio. Can't plan on any excursions without big worry! Am thinking of quitting that so I can have my (wheelchair) life back!
Agree about handicap bathroom stalls too.

Beth avatar


Very honest, witty and funny. Love this column.

Pegg avatar


Thanks for being honest.. boy does it like to hit below the belt! But then again I have had hit me in the jaw with TN pain. Not sure which is worse

Vita Palazzolo avatar

Vita Palazzolo

Love your humor John! Can definitely relate to the Modafinal & Cheese comments. Last year I just couldn't take any more pee accidents and had Botox injections in my bladder...what a godsend! I had my life back again and wasn't running to the bathroom every five minutes any more. I'm about ready to have the procedure again as it only lasts about 6-8 months. Thanks again for the laughs & Stay Strong!???

Anand avatar


MODAFINIL belongs to a collection of drugs called 'stimulants' used to enhance wakefulness in persons suffering from narcolepsy (immoderate and uncontrollable daylight hours sleepiness). Narcolepsy is a clinical circumstance wherein someone faces immoderate daylight hours sleepiness and face sleep assaults that make someone nod off abruptly in beside the point situations.


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