How embarrassing…

Some of my most embarrassing moments with multiple sclerosis have been bathroom related. It’s not always easy to talk about the challenges I face on a daily basis when it comes to toilets, toilet paper, and accessibility. It’s not like I can just start a conversation, “You wouldn’t believe the mess I made in less than 10 seconds flat yesterday.”

The muscles that control my bladder and bowels simply don’t work for me. No matter how hard I try, my brain will not communicate to that area of my body. Believe me, I’ve tried. A few years ago I had a suprapubic catheter surgically inserted to help with my bladder issues. It’s a catheter that is inserted in my belly and attaches to a urine bag. So basically, my bladder is an external bag that I have to periodically empty in the bathroom throughout the day.

That is one of the best things I have ever done in my MS journey. It’s not maintenance free and comes with it’s own set of challenges, but at least I don’t have the unexpected accidents like I did in times past. The only time I have bladder leakage now is when I have a kink in my catheter or have forgotten to empty the bag in time. Even with an external bag, that can happen.

I used to tell people that my bladder and the front door conspired against me on a daily basis. Every times I would make it home after I had been out, as soon as I got to the front door to unlock it, my bladder would no longer hold things in. I can’t even count how many times I had to take a shower and wash a load of laundry after I got home.

Now, my bathroom accidents mainly happen due to my bowels and me not getting to the toilet in time. The problem for me is that since those muscles are not working, I can’t flex or constrict them to help hold anything in. I get at most 30 seconds to make it to the bathroom, pull my pants down and sit on the toilet, and many times I don’t quite make it.

One thing is for sure, my abs always get a workout when I finally make it on the toilet since those are the only muscles I can still control. I should have washboard abs by now.

Is that TMI? It may be for some people, but I think open and honest conversation is always best. It helps both those with MS and those caring for someone with MS.

When I am out of the house, bathroom location is the first thing I think about. I want to know where the closest ones are and if they are wheelchair accessible. And just in case I don’t quite make it, I also keep a change of clothes with me for those unexpected moments.

Hey, s*** happens and most of the time I have no control over it.

MS Gets on My NervesMS WarriorMS Superhero  


About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

27 replies
  1. Fran Logan
    Fran Logan says:

    Thank you Penelope for this article. I am actually crying whilst reading it. I felt like I was reading my story. This is something non MS people cannot or don’t want to understand. I get said to me ‘why didn’t you go earlier’. THERE IS NO EARLIER, WHAT PART OF THAT DON’T YOU UNDERSTAND! I have experienced both bowel and bladder horrors. The number of times I have been trying to put the key in the door and doing a dance at the same time only to have to shower and do a load of washing once I get inside. Thank you again for your honesty. I love reading your articles. Fran xx (Queensland, Australia)

    Reply
  2. Thomas
    Thomas says:

    Also a big thank you from me, Penelope! I’ve also had numerous accidents. Don’t have a solution for the bowel problems yet, but I just recently started catheterizing myself to help me deal with my bladder issues. I also believe that it’s important to be open about these issues since they affect most of us.

    Best wishes from Germany
    Thomas

    Reply
  3. Peggy
    Peggy says:

    Heard them all! Hmmmm…as if the first blood test they did was for Lyme Disease EVEN THOUGH I’VE NEVER HAD A TICK BITE…did it anyway…kinda puts all the other tests had do MRI’s, lumbar punctures. ..etc to Confirm the diagnosis of MS ….Hmmmm

    Reply
  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks for being so honest Penelope. I have a blocked urethra tube and it doesn’t ;let me pee and just fills me up and caused retention. So after a lengthy (not long type lol) time I have a supapuge cathea fitted and it’s starting to get better. The main problem is getting the tap caught on my wheelchair when getting dressed and that could have been worse but no problem. The other thing that has happened is the tap has been turned on by something and wet my pants which is a bit embarrassing but not the end of the world. I just have to be careful. it has been good to feel my bladder working again. But I must say having the cathea it has sorted my bowel out and lets me at least have a good movement sometimes and that is good.

    Reply
  5. Rachel Sinclair
    Rachel Sinclair says:

    Thank you for being so honest. I blog about my journey with MS as well but really struggle to broach my bladder issues in my posts…I suppose I’m too scared and embarrassed (I’m only 2 years diagnosed) so I think you are really brave and it has given me a little bit more of a push to try and be as honest as you, thank you xxx http://www.theblondewhoblogs.com

    Reply
  6. Elaine
    Elaine says:

    Yes….it is really good to realize that you’re not alone with these problems and situations. I can relate with everyone here, especially you, Penelope. I have a suprapubic catheter which is a godsend, and, as you say has it’s own issues, but I will take those issues in lieu of dealing with the incontinence. Working on the bowel issues, some improvement with prebiotics and probiotics, but still have the occasional “accident”. What gets me down many times, is having the fear of going out with friends so I am quite homebound now. I also wish for more understanding from some family and friends, but that just comes with the territory I guess. Thank you for the open discussion about these dreaded MS side effects. Appreciate the candor and understanding.

    Reply
  7. Debbie
    Debbie says:

    I think we all got a little closer to one another with this post!! I’m still blown away by doctor’s responses when I tell them I no longer have bladder control. They do a double take at me, and say “REALLY??!?” Nah, I just make this stuff up to add to my sexual allure. #NotTMI #OurReality

    Reply
  8. Roland Clarke
    Roland Clarke says:

    I can so relate to this excitement/embarrassment even using a different sort of catheter. Most recent – twice – was when my bag remained open so I pissed on the floor. I thought my ‘latch-key’ problems were over not changed. And don’t mention bowel accidents when I can’t get my wheelchair to the bathroom in time.

    Reply
  9. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    Good morning. My body and this post were working together. Not the best way to start the day…..”Oh MS, what interesting times we have together. Any thoughts on when you will be moving out and going to the galaxy Far…Far…Far..away?!?”
    Be well my fellow Warriors.

    Reply
  10. Peggy
    Peggy says:

    I can relate to your honest and open commentary and everyone’ s comments!! Have to use bladder undies and not found any either to address those embracing ‘bowel’ accidents! Used Depends but now use Always which fit better and definitely hold the pee even though the pad is so thin!And at least can throw them away if have any ‘B&B’ accidents….
    Love those thoughts for the day too and if anyone does find that trapdoor let me know😂

    Reply
  11. Leslie
    Leslie says:

    I too am a longtime member of the B&B Club. Don’t you just hate it when you’re anxiously waiting for the w/c accessible bathroom stall to become availble then a perfectly able bodied individual saunters out! Aghhh!

    Reply
  12. Erin P.
    Erin P. says:

    I can’t even count all the times that I have had “an accident” but it’s never easy to explain to those who don’t understand. One of the most embarrassing moments I had was 5 years ago on my Honeymoon. My husband and I took a boat ride along the St. Lucia coast with a dozen other couples. Once we reached one of our destinations all the females headed straight to the restroom… unfortunately I can’t jump to the head of the line so I stand there patiently waiting and trapping my foot telling my brain and bladder to work with me, please please please work with me, and then it happened….my worst fear, how do I explain this to the twelve women standing there starring at me like there was something the matter with me. Yes, ladies there is something the matter, I have MS and I know none of you will ever understand, but YES pi$$ happens too.
    Thank you all for sharing your stories and for being brave enough to tell these embarrassing private hush hush things that actually do happen to us wether we want them to or not.

    Reply
  13. Cindy Perkins-Wereley
    Cindy Perkins-Wereley says:

    This is a club I never wanted to join, but every comment connected me to each of you. Amazing. Thank you. We certainly do have some stories to sharem

    Reply
  14. Candy Clanton
    Candy Clanton says:

    Thank you, thank you, thank you! Dealing with this part alone is hard. My husband is just as supportive as he can be but he doesn’t really understand what it feels like to have to wear these undies, to try and keep diaper rash at bay, to have to clean up/change clothes in a public restroom stall that is wholly inadequate to the task.

    Reply
  15. Tilly
    Tilly says:

    thank you for writing about this, no one talks about it. am sure my bladder knows I’m at the back door when coming home and just relaxes. still looking for solution. No MS nurses in area any longer so no one to ask.

    Reply
  16. Lauren Singer
    Lauren Singer says:

    I could tell my mates, “meet you at the Bowel and Bladder. The trendy new pub on the High Street. “ only there is no pub and I don’t have any friends who would meet me there. So I invite you. It is rather exclusive. It is a no fun club.

    Reply
  17. Meeya
    Meeya says:

    Thanks so much for sharing this – it’s so so hard to find people who are honest about this problem. I really hate all the planning this involves, every single das, 24/7.
    And then you managed to just blow me away with your last sentence there… Still laughing 😂🙃
    You’re such a star… 🌟

    Reply
  18. Sherry Kefauver
    Sherry Kefauver says:

    Thank you so much for posting about this. No one wants to think about it, so no one discusses it. As a result, you’re on your own to figure out what you need to do to lessen the embarrassment. It can’t be eliminated, so we look to lessen it. I still haven’t found the incontinence underwear for every circumstance, but I have figured out several. I have one on-going situation that I’m still working on resolving. At least it doesn’t come up often, but I still have to figure that one out. If only it were required that bathrooms be on every floor of a building. We can dream…

    Reply
  19. Nancy
    Nancy says:

    Thank you for your open and honest contribution regarding this aspect of dealing with MS. We have no choice but to deal with the good, the bad, and the ugly.

    Reply
      • Debra Godlove
        Debra Godlove says:

        Thank you for being so honest about these MS problems. I also have the same problems. Have had 2 botox injections to my bladder to help control the urgency. Worked pretty good until I had to start taking a “fluid pill” to help with swelling in my feet and ankles. Working against each other. I also have ulcerative colitis which can cause bowel problems. On many occasions I need to wear a depends. Some how I stay positive and go out and have a good time! Debbie

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