What You Need To Know About Bowel Problems And MS
What You Need To Know About Bowel Problems And MS
I don’t want to write this post. Bowel problems (or bowel dysfunction) in MS is a tricky topic, even for a professional over-sharer like me. I’d rather keep this side of my story on the down-low, because acknowledging this much of my secret self to strangers on the internet is a risky proposition.
I’ve written lots about the impact of a neurogenic bladder; and yes, peeing your pants straight-up sucks, but in the language of my WASP’y grandmother, who refused to call anything like it is, my problem with number two is often my number one problem. Bowel dysfunction is an absolute horror, and for many, it’s the most distressing invisible symptom of MS.
Wait. WTF is Bowel Dysfunction?
When I posted this mini-rant on Insta a few weeks ago, I was stunned to see a handful of people with MS who had never heard of a neurogenic bowel and didn’t realize the problems they’d been having could be connected to their MS. What the hell, docs? Do better. If you have MS, there’s a good chance you may be prone to bowel problems like constipation, diarrhea, and the ultimate torment: incontinence. This is bowel dysfunction (BD), and it’s a kind of a BFD. MS can feel like having a bunch of different diseases or disabilities at once, and if you have MS-related bowel dysfunction you might as well add IBS (Irritable Bowel Syndrome – emphasis on the irritable) to your résumé.
Oh. Shitty.
No shit. Have I mentioned that I don’t want to write this post? When you write publicly you have to assume your worst enemy is reading. Well guess what Brenda, I poop my pants. Does that make you feel better? Of course it does, you troll. But I am nonetheless compelled to write about how MS can mess with bowels, because you need to know you’re not alone. You need to know there are things you can do. You really need to know that a neurogenic bowel is a common MS symptom that affects a whole hell of a lot of us. It’s miserable and overwhelming, and it can be very, very lonely.
We don’t talk about BD because of the stigma and humiliation that come with violating the social contract to put the poop in the proper poop place, that most of us have mastered by the age of 3. Humiliation is why we suffer in silence. Even if it makes you feel like you want to die, technically bowel dysfunction in MS isn’t going to kill you. Well, not directly. If you’re already a falls risk, running to the restroom when you can’t actually run can be a recipe for disaster. Everyone knows that constipation (fewer than 3 bowel movements a week) can be uncomfortable, but left unchecked, it can also lead to serious problems, like fecal impaction. Chronic constipation can cause back pain, and if you already have difficulty moving, constipation can make walking harder. And the less you move, the worse your constipation.
BD is an issue that needs addressing. Because after all, this is a medical problem. There are things that can help like increased water intake, dietary modifications, exercise—and, I’m getting pissy at myself just writing this, because I know first-hand that even though I drink the water, eat the greens, take probiotics and magnesium supplements, and follow a strict bowel routine, my careful planning and best practices fail anyway, and I’m forced to rely on the Hail Marys I learned in Catholic School.
Hail Mary, full of grace, please don’t let me black out from humiliation; but on second thought, please let me black out so I don’t have to endure this humiliation.
Not surprisingly, the Blessed Virgin has better things to concern herself with than my wounded dignity, and Jesus has been ignoring my texts. I’m not above seeing what kind of deal I could work out with Satan, but keeping me in misery is kind of Satan’s jam. Which means I’m on my own. And frankly, that’s how I want it. Let me hide in the bathroom for two hours in peace.
Of course, BD is more than a medical problem, it’s a social and emotional problem too; and, the consequences of bowel mishaps are arguably worse than the incontinence itself. If you have BD, your bowel is your body’s Supreme Leader, yielding absolute power, controlling every single thing you do (or don’t do), every single day. If Vanity Fair calls wanting me to do the Proustian questionnaire, my answer to What is your idea of perfect happiness will be: total confidence in my bowel. Otherwise, all I’m ever thinking is where’s the closest bathroom, and FML if it’s down a flight of stairs.
Managing a neurogenic bowel requires constant planning. There’s no room for spontaneity in my life. If you want to meet for coffee, I need 48 hours notice so that I can adjust my supplements accordingly. BD can be socially debilitating. There are a number of reasons why someone with a chronic illness like MS might call in sick or cancel plans at the last minute. You think we’re flaky, but it’s not easy to explain to uncomplicated poopers that you need to stay close to a bathroom. Even if you are in the circle of trust, we feel the low-key irritation of friends and family when they have to wait for our stars to align so that we can safely go out.
Dealing with the practicalities of managing BD, along with the emotional effects, when most of us simply don’t feel we can talk about it, can lead to depression and anxiety. The humiliation of public incontinence can lead to loss of social status. BD can threaten what we believe about ourselves. Of all the things attempting to erode our dignity with this disease, navigating bowel dysfunction in a culture where continence care is still the butt of too many jokes, requires Kanye-grade confidence to maintain self-esteem.
If you’ve been betrayed by your bowel once, you remember it in excruciating detail. When it happens on the regular, you figure out how to move on. My coping strategies involve treating myself with the love and care I would give a friend in a traumatic situation, and that almost always means presents. I feel proud of myself when I take my MS knocks in stride, and maybe I deserve a new lipstick for my trouble—a reward for how fucking hard this is. By giving myself a prize instead of wallowing in shame, I’m reminding myself of my worth. I’m acknowledging that I didn’t cause this, this isn’t my fault, and this has nothing to do with my character, or yours.
I’m not an outlier or the exception. In MS, this is it, this is normal. Shit happens. The world needs more compassion and open dialogue. Bowel dysfunction doesn’t just affect the MS community. Common conditions like Crohn’s, colitis, bowel cancer and others impact hundreds of thousands of people who are suffering silently; you almost certainly already know someone else who can relate.
I didn’t want to write this post, but there’s something cathartic about acknowledging the whole truth about what we go through with this disease. If you wanna talk shit in a safe space, I’m hosting a guided chat in the MS Healthline app on Tuesday, September 22nd at 4pm Eastern. Download the app here. Don’t leave me hanging.
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I could not love you more right now.
Oh my gosh, I didn’t realize how badly I needed to laugh about this exact topic! Thank you, thank you for normalizing our strangely abnormal world. It always makes me feel less like an alien living in plain sight.
Amen!
I hear you sister. My constipation really does FML. Would love to hear more about your supplements and process. Right now I’m testing and having “interesting results” with the new Dulcolax soft chews. I had a mini meltdown at the beginning of pandemic when I almost ran out of gloves.
It’s still so hard to stay well-stocked in gloves! I’m using extra-small or extra-large and feeling like Goldilocks, just taking what I can get.
Tune into the Healthline chat on Tuesday and we can swap tips on which supplements and products seem to help.
Ardra, your honesty helps me so much. Thank you. And you make me laugh.
Thank you for writing this blog post! It feels so good to know that I am not the only one, and now I can share this with anyone who wants to know more about MS!
My bowel dominates my day. Not just because of the movement (or lack of) but because I was brought up in India. Where people wash afterwards. I can’t use public toilets because in Canada, there’s no hand shower thingy to hose yourself off. When I travel, I have a packet of flushable wet wipes handy. I’m terrified that one day I might have to use the toilet on a long-distance coach. It’s why I will never be a member of the mile-high club – the thought of the trauma that people go through to use the toilet on an airplane.
Hear! hear! Of all the loses in the past few years; the decreased mobility, lack of energy, difficulty reading and writing, saying goodbye my professional life, the decreased physical activity, and social activity ; bowel dysfunction has been the most difficult adjustment for me to make
Bowel dysfunction has played havoc with my self confidence and self esteem. The exhaustion I experience during and after cleanup is like adding insult to injury. It is difficult to respond in a self supportive way when I am feeling so ‘shitty’.
Acknowledging that bowel dysfunction is a crappy reality and not a failure on my part has helped me take back my power and while I can’t always control what my bowels do, I can control how I treat myself when it happens
I hear ya. 3 years of this happening every time I got in a car before my diagnosis finally last November. Even on the way to the airport to go on holiday resulting in a stinky flight and I’d already disposed of three bikinis before we even arrived. Unfortunately this led to my husband leaving me as he wants someone who smells of roses and can go places. I don’t blame him. It doesn’t happen so much now so maybe I’m ok on my own! We still share our son and that to me is most important of all. ?
So, this will probably be TMI. I have a trifecta of bowel shit…Sorry, I meant crap: colits; advanced MS and SIBO. The advanced MS means I have no contractions in my bowels, so even if my colitis is in flare (like it has been for the past year) I have to take magnesium and coffee to “go”. Diapers would be great, but I react to the latex. Strangely, I’ve never had a noticable public accident, but there’s a reason my underwear are all black. I had a doctor’s appt. yesterday, which I schedule in the PM, because the AM’s can be a bit apocalyptic, bowel-wise. My husband called me the day before to tell me the good news; they had an early AM cancellation, so he changed it. The gymnastics of keeping this appt. meant: less mag. the night before; starting my coffee early and the rare enema. Bowel management and MS is a full time job.
Amen. You are truly amazing in your honesty. ?
I just have to say I absolutely love you!!! You talk about everything and I need to read this so I know i am not alone ❤
Oh I literally feel your pain in the butt! It’s brutal, emotionally and physically. Bowel and bladder issues were some of my first symptoms since starting my journey with MS 29 years ago. It’s been a long road. Thanks for talking about it. I don’t wish this on anyone, but it does feel better to hear that other have similar experiences.
I totally understand! I had to have my doctor write a letter to my employer so that I can work close to home so I don’t have to worry about not being able to make it to a restroom. And that was way before Covid which has me working from home.
I have breast cancer besides the MS, so I poop all the time. I told them in chemo what was going on and I just loved what they wanted me to do: eat applesauce, toast and rice- reAlly- are you kidding me. 6 weeks later after pooping 42 times a day they finally gave me a pill that worked. I hate all of this . The doctor’s first answer was that I could take immodium 12 times a day- really- and that is all the help I could get until I bitched enough. Geeze doctors pay attention to your patients!
I love this post. My husband always wondered why I spent so much time in the bathroom. It was either chronic constipation or chronic diarrhea. I luckily have found a solution that works for me perfectly. The solution for me was a metamucil fiber wafer every morning. The magnesium in my daily green smoothie only gave me green poo. I’m sure I get a tiny bit of benefit from it but it certainly wasn’t bowel regularity.
I loved reading this. It made me laugh and so could relate. A friend of mine who also has MS had some good shit stories. We would share our stories and we would just laugh. We ended up calling ourselves,The Shit Sisters
Thank you… I literally gross myself out. I needed to laugh about this. My bum is in a constant state of distress. .
I need to make ☮️ with the ?
You are not alone, my friend!
Hands down the most difficult thing to deal with for me! I remember the relief the moment I realized, “Oh, this is an MS thing” and not just an I poop my pants unexpectedly for no reason thing. It keeps me really isolated and going out has become a battle with anxiety almost every time from PTSD. Thank you for giving voice to it1
Yes! I am not alone, and this is an MS thing! Thank you for addressing it. I’ve had bowel control issues since before I was diagnosed in 1991 at age 24.
Some of my tips: belted undergarments (diapers, also known to me as safety nets), so you can dispose of them without having to remove your clothes in a public restroom. Carry wipes and xtra undergarments & a plastic bag to put soiled safety nets in. Don’t eat too much (esp in public). Public coffee- no. Calcium and prenatal multivitamins (because of the iron) as well as all my antispasmodic meds can help with their constipating effects.
Thank you so much for this,
So Grateful I’m not alone.
I was diagnosed with Relapsing Remitting MS in March 2009, progressing to Secondary Progressive MS after 10 years and Bladder problems ensued.
Thank You for being so brave! Finally, the truth about the nasty bowel issues. It has been the bane of my excistence since I was a teenager. No matter how much salad, prune juice, water etc…I had to have operations when I was about 40 & again about 15 years later because I was ripped to shit…It took 27 years for me to get a diagnosis. I was a lecturer at that time & I could not remember how to spell certain words & when the students asked questions my brain would go blank. I would be full of caca most of the time I taught. I could not wait for the classes to be over so I could go home & be alone in my misery. I am now 64. I can spend a whole day trying poop with no luck. It has ruined many a day. For years now I would have loved to have a companion, but the occasional diaper dilemna &/ or shitting the bed does not give me much confidence – Oh fuck this MS shit!
You are one awesome girl. And I LOVE the Brenda joke. I love all of your humor. You’re a fabulous writer. I don’t have MS. I have spino cellebellar ataxia (SCA). It causes terrible balance, and other problems similar to MS, but it’s rare so most haven’t heard about it. I just found your blog and you’ve been a huge inspiration to me. Trust me, I was poor-me-ing myself on the regular. Thank you for the wonderful — much needed — work you’re doing in the world!
Wendy p.s. Also, have you listened to the Two Disabled Dudes podcast? Omg, it so good. They interview a different person with a different disease each week and it is one upper of a podcast. (They’re both hilarious.) 🙂
Thanks for reading, Wendy! I’m so happy this blog is helping.
I haven’t heard of Two Disabled Dudes, but will check them out. Sounds similar to Sickboy Podcast (I was a guest. A very ‘bro’ kind of vibe. We need the chick version of this!)
Funny, that’s exactly what I was thinking re: a chick podcast. You fit the bill perfectly!
Wendy
❤️?, thank you ?. If you saw my face it’s stunned. No dr , no one has ever been so clear about this with me. I didn’t know what was happening. My own family blows me off because after 25yrs +, I’ve made vague excuses for why I couldn’t . . .
Never telling them the truth.
Thank you ?
It’s disappointing how many doctors are letting ppl w/MS down. There are things that can help and we need the guidance of docs to figure it out. Not to mention that if even your doctor doesn’t want to talk about bowel dysfunction the feelings of stigma and shame are amplified.
Well someone needed to talk about it, thank god it was you! And F*%& Brenda! (Or whatever he name may actually be) Keep telling it like it is girl because this is one hell of a ride we’re all on and the only way we’re getting through it is together ❤
She knows who she is. ?
I soooo love you! One does totally fell all alone in this! My MS Dr told me it’s so rare it’s not my MS causing this problem for me! This particular problem started 9 years prior to my diagnosis.
My head is going to pop off my head if I hear of one more person whose doc denies this. Unbelieveable!
Thank you for posting this. I relate to this so much and makes me feel
Comforted to know I am not the only one with this issue. My neurologist also told me it wasn’t MS- good thing I take everything he says with a grain of salt. So glad I found this blog
Something I’ve always wondered that even my beloved neuro couldn’t answer: does anyone else out here have…I guess I’d say, “slow” movements? Like, however long it takes me to poo is just however long it takes. It’s not constipation. It’s more just like those muscles move at their own speed, so I’ve come to accept that I need to allocate 15-20 minutes for restroom trips. It makes between-meeting breaks not so fun.
I do also have lymphocytic colitis but that’s a whole different disgusting friend. Yay, poo. Such fun.
You should try glycerin suppositories. They promote contractions and work very quickly. At home, glove up with a little lube. A circular swoosh with my middle finger can get it going. Apparently there is no such thing as TMI when it comes to MS.
Thanks Andra .. this subject needs to be less taboo… i’ve come to the conclusion that keeping a pair of scissors in the bathroom would be a good idea.. for when i’ve got past the ‘woops too late’ stage and i’m at the ‘Omg where do I start ?’ stage…it’s not easy sorting yourself out when you’re already fatigued from trying to get to the bathroom as fast as your wobbly legs can carry you.. after trying to remove your clothes as gingerly as possible .. dealing with the ensuing carnage … and then having to shower to boot… by this time i’m just utterly ‘wiped’ out ! but it’s just one of those things we have to accept and try to deal with as best as we can… i’m not embarrassed to talk to my family about the subject anymore and tbh it’s they who keep checking if i’m ‘ok’ before we go out anywhere … and if there’s the slightest ‘ermm’ … they say right we’re not going yet! ?
Hi Michelle, I understand problems with bowels. I have dreadful problems with my bowels, constipation for days and then nearly diarrhoea. I don’t know how to fix these problems. I drink loads of water and take different medications but nothing helps. At times I am scared to go out incase I have a really bad bowel motion. I’m very interested to hear you have problems with spelling etc. I am not working at moment and thought maybe my memory problems where because of being in house. My concentration is awful. Cant remember conversations. Would love to hear from you. Margaret
This works for me! This has been my saving grace. Pitted prunes! And I also try to have Metamucil in the morning. My BM’s are not every day but they are much easier and not so impacted and scary. When I first started with the prunes I had about 10 in one day. And I did that for a few days, but now I try to have at least six pitted prunes in a day. It really seems to work for me but of course I am optimistically cautious.
What goes in must get processed and then go out, simple. Not mentioned were painful colon spasms or worse, even more painful intestinal spasms near the ileocecal valve, ending with vomit from deep within the bowel, not stomach. Best advice, do not overload the digestive system. Yom Kippur often to give it a break.
I adore your openness! I have had an ileostomy since I was 11 years old, and was diagnosed with MS in my early 30s . Sadly, it’s taken me till now (I’m 51) to be open about my ostomy. I had so much shame attached to it.
We all poop ? I can’t tell how liberating it is to read, and write about shitty stuff. Thank you for helping to break down stigmas!
Thanks for sharing your story, Lindsay. I can’t imagine what it was like to go through that at 11. I am seeing some powerful, positive images and discussions about ostomies on social media these days. Things are changing and I hope that the 11-year-olds dealing with this now, will have positive examples to look to, so that they don’t grow up with the same kind of stigma.
I just saw this! It’s great to find a “poop group”. I thought it was just me. I will have to bring my doc up to speed. I had an anal fistula years ago, have half an anus, and now with this ridiculous constipation, I’m afraid it’s all going to just explode. Thank you all so much for this info!
I needed to read this so much. I know it’s common in MSers but something hardly anyone talks about. You spoke to every aspect of this so well. I am absolutely referring to people who don’t live this life as “uncomplicated poopers” from here on out. I have had a lot of help from Pelvic Floor PT and becoming a “complicated pooper” (daily bowel routines are a drag but help a lot).
Thanks for commenting and I’m so glad you found this helpful.