MS and bowel incontinence definitely do ‘break my stride’
A classic hit from the 1980s prompts a reflection on the digestive system
Age is just a number, right?
Most of the time, I don’t mind getting older, but it does occasionally bother me. One scenario is when I have to swipe more than three times to find my birth year on a website. Another is when a song I grew up with is referred to as an oldie.
This happened the other day when a song that was popular when I was a kid came on the radio. The DJ called it an “oldie.” The song was “Break My Stride” by Matthew Wilder, from 1983. As I was smarting over the vintage label, a line from the chorus caught my attention:
“Ain’t nothin’ gonna break my stride/ Nobody gonna slow me down/ Oh no, I got to keep on moving.”
A vicious cycle
The reason it gave me pause is that while my multiple sclerosis (MS) diagnosis came with plenty of undesired symptoms, one of the worst was slowing down my digestive system. I rarely refer to myself as constipated, but there’s no doubt that I have slow motility. MS broke my stride a few years back, but even before my diagnosis, it had been slowing me down and forcing me to find ways to keep moving.
For this column, I’m going to stick to discussing bowel incontinence. MS has certainly caused me urinary problems, too, but that’s for a different column. My bowel incontinence ranges from extreme urgency and the occasional accident to extremely slow motility, which is the case most of the time.
By definition, I guess I am constipated, but it isn’t really difficult for me to go. I’m not straining or trying to pass bricks. I just have to rely on the pressures of time and gravity. That might be OK if my mood weren’t affected so much.
Everyone but me probably already knew this, but the gut significantly affects the brain. For instance, diet can affect inflammation and regularity, which in turn influences one’s physical and emotional states. I, for example, have a variety of moods and emotions when I haven’t made a trip to the bathroom in several days. These emotions range from irritability to anxiety and depression. To further complicate things, constipation causes stress, which can lead to any of those moods, and then stress can lead back to constipation. It’s a vicious cycle that can be infuriating when your body betrays you. It’s an MS symptom that we should probably talk about more, but rarely do.
My diet could be better, but I don’t eat a lot of processed foods and I get plenty of fiber from fruits and vegetables. I’m certain that some of my medications, especially Lioresal (baclofen), contribute to my bowel issues, but the truth is that I was having these problems before I started taking a disease-modifying therapy. I mostly blame being more sedentary and the muscle weakness and spasticity that come with this disease.
Being honest with our doctors can definitely help. This includes our primary care physician, but our neurologist probably isn’t a stranger to this symptom and might be able to offer solutions. So far, other than taking an occasional fiber supplement, I’ve managed to avoid laxatives. I do regularly take a stool softener so that when a bowel movement finally happens, it isn’t difficult. As a wise friend once told me, “I don’t want to go to the bathroom and have to work. I want to go in there and relax.”
I hope I haven’t ruined that song for you. I’m a little sorry it didn’t prompt me to write about a happier subject. But what can I say? MS isn’t a happy disease. It’s important to talk about the unhappy things, too.
I hope that people, particularly my own children, start to refer to me as “vintage” or “classic” rather than “old.” No luck yet.
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, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Colette Page
Great read! I really appreciated the honesty,
‘Vintage’ ha ha, same for me,1983 was my youth, I was 19 then!
My motility has slowed down & I have urgency too. You could literally have written this about me!
Thank you
Benjamin Hofmeister
Hi Colette and thank you for the comment! Yes I think we are both vintage and that's not a terrible thing to be.
José M
Dear Ben,
Thank you for sharing. I do understand very much the problems you feel with constipation because i used to have almost the same situation that you've described.
Now I’m definitely better since I’ve started thanking magnesium. I take one full teaspoon of magnesium citrate, with water, per day, in between meals and without food and, that very much normalized my intestinal transit.
Benjamin Hofmeister
Thanks Jose! You are the second person who has mentioned magnesium. I am going to look into that ASAP.
Marion Jones
I have IBd with constipation and slow gut transit. I do hypopressive breathing exercises. With Moonrise Healh
Benjamin Hofmeister
Thanks for the comment Marion! I am looking up those breathing exercises right now.
Lisa Kandel
I remember that song. I like to refer to those "classics" as my childhood.
I have bowel issues myself. When I have to go, I have to go. I can no longer take a chance and "pass gas" just in case that is not the case. I've had plenty of accidents but up to this point I have been very blessed I was always home when it happened, and it has always been before leaving for work.
Stay strong and carry on!
Benjamin Hofmeister
Thank you Lisa! I will stay strong. Hope I didn't ruin that classic for you
Bryan
My problem is the opposite! I have to go several times a day..and I had better be within feet of a bathroom when it hits! I am 49 and was diagnosed at age 32.
Benjamin Hofmeister
Thanks for reading Bryan! I'm 49 this year too and probably could have been diagnosed when I was 32 if I hadn't been ignoring the symptoms. Instead I was diagnosed at 38.
Mike Purcell
Good article. You're always on topic.
Benjamin Hofmeister
Thanks Mike! Oh how I wish I wasn't on topic
Patrick Basurto
I have experienced similar issues. I saw a pelvic floor physical therapist and the recommendations as well as exercises were extremely helpful. Some of the things we do to try to compensate for our physical issues turn out to be counterproductive and create more problems. Unfortunately, I had to wait about 4 months to get an appointment as the number of PTs trained in this area is scarce.
Benjamin Hofmeister
Thanks Patrick! Yes, I would imagine that physical therapy specialty is rather rare. I'm still going to look for one though.
CLAUDIA HAUGH
Oh my gosh, you have described my MS/bowel issues to a T except for when I finally have to go, I HAVE to get to a bathroom ASAP, like within minutes or I will have a very embarrassing explosive situation on hand!. . This has happened a number of times and the embarrassment is extreme as is the resulting cleanup. I've learned to be prepared with appropriate undergear but the whole situation has made me afraid to leave home most of the time and I have turned into a relative recluse. MS sucks in so many ways but I thank God that my MS is bearable even if I do have to stay close to home most of the time.
Benjamin Hofmeister
Thank you for reading Claudia! I had an accident in a restaurant one time. Thankfully I made it to the bathroom before it occurred in the seating area, but embarrassment is texting your wife from the bathroom telling her to pay the bill and that we need to leave the premises immediately. I have not been back to that particular restaurant which is a shame because it's a good one, but I'm afraid they have my picture on the wall or something.
Dee Griffin
Remember the song well. Your article really resonated with me. Attending an event soon and was offered front row seats. Yay! Then oops, I have MS. Not such a good idea.
Benjamin Hofmeister
Thanks for reading Dee! I hope I didn't ruin that song for you.
Bonnie Porcelli
Knew it was you. Your style of writing is unique and frank!
Benjamin Hofmeister
LOL thank you Bonnie! I wear unique and frank like badges of honor.
Alison Scofield
This is something that I have never experienced until last year. It horrifies me because it's only occasional, and I can't predict when it might happen. Plus, I'm also dealing with constipation, and mainly trying to manage it with diet. I can't say that it's very successful. I'm going to try adding a stool softener to my pill regimen. Maybe it will help. I appreciate your article for opening up about an uncomfortable symptom of MS.
Benjamin Hofmeister
You're very welcome for the column Alison! If we can't talk about it here with other people with multiple sclerosis, I'm not sure if we can talk to. I do bring it up with my doctor, but he doesn't have MS and my problems are not exactly like the problems of his last patient. I'm not implying that he isn't helpful just that other people with MS are more helpful. The stool softener has helped me a lot. It isn't a laxative, it just keeps going from being difficult.
Ellen Lerner
My issue right now for some reason is total liquid stool. I’ve been through the constipation phase On and off which comes and goes, but for the last week or so, I don’t know what is causing this liquidation. I feel OK otherwise. I My MS situation 18 years now has always been mild. I probably had MS long before I had that first incident when I was diagnosed, but I never knew it. So what’s causing this situation now whether it’s something I ate or maybe a medication Or maybe MS, I really don’t know. It’s not frequent, but it can be urgent. has anybody else had this experience?
Benjamin Hofmeister
Thanks Ellen! Yes, I experience urgency or the complete opposite. It is rarely the same thing back to back. Before I got control of my spasticity with the baclofen pump, I blamed lack of control on clinched up abdominal muscles. After the pump when everything was relaxed, I blamed urgency on relaxed abdominal muscles. I'm sure my baclofen pump plays a role, it's just not a very consistent role.
Christopher
AAfter all we GO THREW 🫠😇 keeping it together 4 the CREATOR🤗they change the Gamel TO all my fellow disabled, Hang~0N😇FReedom from SUFFERING IS OURS WITH OUR CREATOR!!!😇🤑
Benjamin Hofmeister
Thanks Christopher! Yes, this is so frustrating! Multiple sclerosis has my legs, hands, sleep, and eyes. Why couldn't it leave my digestion alone?!
Beth
Thank you for this article. I am seeing a specialist doctor next week who specialises in neurological conditions which effect the bowel. Hope to get guidance on how to deal with this awful effect from MS.
Tina Blunk
How did you find such a specialist? I’ve never seen this category.
Benjamin Hofmeister
Thank you so much Beth! I've started putting out inquiries with both my neurologist and general practitioner expressing interest in finding just such a specialist.
Kathy
Thanks for your insight upon a tough subject. I too become constipated at times. Several years ago my primary care physician suggested magnesium citrate (liquid). I buy it at Walgreens. I take it at bedtime if I’m “overdue” for a bowel movement.
Benjamin Hofmeister
You're very welcome Kathy! My mother swears by magnesium, but I've been avoiding laxatives because I don't truly feel constipated. Like you said though, it might be a nice thing to have on hand for those moments when I'm overdue.
Dawn R Stell
I do not have any issues with constipation. That is NOT my issue. The opposite is my issue. I do not have control over the sphincter. That is a joy in itself. There are stores that I do not visit any longer. I do now have drugs that help me recognize the pressure or the "presence" of a visit from intestinal packaging center. That helps, but if I ignore it or do not hurry, I am in big trouble. It all depends on where that lesion is on your spinal cord my friends. All you can do is keep your humor and hope for the best .
Benjamin Hofmeister
Thank you for the comment Dawn! I wouldn't say that my problem is exactly constipation either because it varies so much. If you'll pardon the expression, it always seems to be feast or famine with me. I find myself either needing to go but everything is moving slow, or suddenly having to go and being unable to stop it. Here's hoping that we find the perfect solution.
Yvonne Ashman
Movicol and Metamucil for constipation, and walking help with MS bowel so much. I have the opposite problem of urgency and not making it to the loo, 3 - 4 times a week. It is exhausting...and keeps me housebound, unless I want to raid my sacred stash of codeine based painkillers to help 'bind' me up, so to speak. I see a specialist physiotherapist for my bowel and bladder issues. Speak to a Continence Nurse, and touch base with your local hospitals to talk to their neurological department regarding treatment. I've just had an SNS unit implanted near the sacrum, it is like a pacemaker for the bowel...it may help in your case? I was on the surgical waiting list for years, because I am one of the 'undeserving poor', so don't wait too long to enquire...unless you have private health insurance...Worth broaching with your healthcare team. MS and bowel issues are the gift that keep on giving, that is for sure. I wish you all the luck for your future treatment.
Benjamin Hofmeister
Thanks Yvonne! I'm going to look into all that ASAP. I've already got a baclofen pump installed and I might be looking at another implant to control my central sleep apnea, so a third implant would be okay I guess LOL. MS is going to make me bionic when all is said and done.
Kathie Koellmann
I've had significant incontinence issues from my MS for well over 20 years, both bladder and bowel. And I've learned a lot. The most beneficial method has been to eat a consistent breakfast every day. I eat eggs twice a week, Flax cereal 3 times a week (not back to back) and organic Greek yogurt with berries twice a week. The eggs give me a good protein (and I like them), the flax keeps the bowels moving and the yogurt has good flora for digestion. Where I have problems is when I deviate and get off a schedule. My gut hates that. I should also mention that laxatives are really hard on the kidneys. I have kidney disease and have always wondered if my use of laxatives for years when I was younger contributed. Hope my experience helps.
Susie
What is flax cereal?
Benjamin Hofmeister
Thanks for all the advice. I do try to eat breakfast every morning but I am not super consistent. I need to get better about that and I'm going to look for Flax cereal
Jenny
Good on you talking about bowel incontinence and constipation. Not easy at all.
Benjamin Hofmeister
No, not easy at all, but who else would I talk to about it? I only want to talk about it to other people who get it. Thank you for getting it and sorry you do all at the same time
Tom A
Hello Ben,
The bowel stuff is "interesting" and yes, who wants to talk about that? For me, it's pay attention to what correlates with your diet/meds, and same as bladder- pay attention and do what you have to avoid unannounced problems. You will learn. The days of those things managing themselves, where you didn't have to think about it, are over. We still get to live and laugh, however.
As to the oldies- I was just reflecting the other day on how youngsters don't get music heroes. For us in the 60's and earlier 70's it was all Beatles and rock'n'roll. You learned a lot from the music. "Four dead in Ohio, Give peace a chance (don't mean to upset you on those), All You Need is Love, Yesterday (perhaps a big one for many of us). The message of Taylor Swift? I guess- "Be smart and don't let them pull the wool over your eyes" (so, not bad). Interesting, both "themes" carry a message- pay attention, learn, adjust.
Benjamin Hofmeister
I knew you were a hippie all along! LOL
You're right though. This is another thing that requires managing that I didn't really want to manage. It seems counterintuitive that managing something feels like losing control.
Ginny
That song must have gotten an uptick in youtube hits since you mentioned it....I, for one, looked it up on and went down Memory Lane. Thanks for the trip, Ben!
Oh boy...the bowel issues! Whenever I go anywhere, the first thing to do is stake out where the washrooms are.... just in case. I've even fasted before a 6 hour train trip, to lessen the chances of an 'accident'. That was quite helpful.
But, oh yeah, the dreaded theatre seats scenario!
I hope you and your readers find some solutions/management advice offered up here.
Thanks Ben, for opening up this conversation!
Benjamin Hofmeister
Great comment! I have literally use the toilet at a friend's house and then had to call on said friend to help my wife lift me off the toilet back into my wheelchair. Fortunately he's still talks to me. This disease will definitely show you who your real friends are.
And you're welcome for the trip down memory lane. I am sorry if that song is now ruined for you.
Jenny Clarkson
Great article Ben, I completely understand as it sounds like we have the same symptoms. It's something that has started happening to me over the last year or so and is really linked with my bladder symptoms too. I also take baclofen and started tizanidine recently, which does the same thing. In terms of 'oldies', I was born in '78 and have noticed that my kids will sing a song, thinking it is new, not realising that the part they are singing is a sample from the 90s!
Benjamin Hofmeister
Thanks Jenny! All my MS symptoms are hard to deal with, but incontinence feels like this disease is personally insulting me. I am so glad you can relate, but oh how I wish you didn't.