When you gotta go

This blog was originally published on March 21, 2016 and updated on November 9, 2018.
 

Where’s the restroom?

There are so many symptoms with MS that a bunch of them often get glanced over. The one that has been the most active for me lately is incontinence. The opposite of constipation, incontinence is where your bladder is going to empty NOW; with as little notice as possible. I never thought that at 31, I would be like my grandmother and know where every bathroom in the county is. It can be super frustrating when out of nowhere, you have to go.

Bowel and bladder problems are no stranger to the MS community. In my many years of talking with all sorts of folks diagnosed with MS, I’ve learned that so many have shared my struggle. There is a special bond created when openly telling someone that you — a grown-ass, bill-paying adult — has peed your pants. In public. And they understand…because they have, too.  

Needless to say, hitting the road can be tricky; but we love to adventure so we make it work. My solution? An empty gallon jug in the car at all times. When it’s time to go, it’s time to go. There is no planning or waiting for the next gas station. 

To those who experience this: you are not alone. I  have even peed my pants walking down the sidewalk in Seattle — on the way to a doctor’s appointment, ironically. As embarrassing as that was (pee smells, folks), it almost feels worse when it happens at home. I can guarantee these won’t be my only bathroom fail stories, and when I tell them I wear them like a badge of honor. The plus side is, I can go just about anywhere. 

I know there’s a long list of medications that help with this sort of thing, but given my history with not-so-stellar side effects, I would rather just work with what I’ve got…unless they produce something with side effects that make everything taste like pizza. Incontinence issues are just a small piece of the MS puzzle, but when you add to other symptoms, it can be daunting. This is just one of the so-called “invisible symptoms.” Maybe it just happens to be invisible because it’s embarrassing as hell. 
 

Editor’s Note: Learn more about bladder issues and lifestyle modifications, medications, physical therapy and nerve stimulation procedures that can help you manage them by clicking here or watching the video below.

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Kellen

Kellen Prouse

Born and raised in the Pacific Northwest. Disabled in 2010 due to progressive multiple sclerosis. I have started the Wheels & Red project with my amazing wife Meg. Wheels & Red is a way for us to share our story with the world. No matter what you are going through you can always find and adventure.

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    92 Comments

  • S West   Mar 21, 2016 12:31 PM
    Thank you for this post. It makes me feel I am not alone, I am not the only one this is happening to.
  • Gail Dunn   Mar 21, 2016 12:54 PM
    I can relate to everything you said, I went through aa stage where I didn't want to leave the house because of my toilet mishaps, I still can't leave without toilet paper in my pocket. Xx
  • Denise   Mar 21, 2016 1:41 PM
    I sure can relate to this, as it has happened to me so many times. One thing I did that really helped me was stop drinking orange juice, and apple juice. It is a bladder irritant. I also wear Poise anytime I go out. I may be mental but when I know I have some sort of protection, I don't get as anxious when I feel I have to go, which enables me to control it better. If I can't make it to a bathroom, the Poise really works...it holds a lot.
  • val bradley volunteer support worker west lancs branch england   Mar 21, 2016 1:46 PM
    I dont have MS. But do have friends that do. Remember none of you want this awful disease so if you wet thats ok. Dont feel embarrased. God Bless you all x
  • val bradley volunteer support worker west lancs branch england   Mar 21, 2016 1:49 PM
    I dont have MS. But do have friends that do. Remember none of you want this awful disease so if you wet thats ok. Dont feel embarrased. God Bless you all x
  • Brad Covert   Mar 21, 2016 2:20 PM
    You're definitely not alone in this. I can remember a few specific instances where my bladder and bowels got the best of me, at the worst possible time. Absolutely embarrassing. Thankfully, I have great friends that understand my situation. However, having to go whenever my bladder wants to has been a constant battle for the last 13 years. Definitely gets in the way. To quote Billy Madison, "if peeing your pants is cool, consider me Miles Davis."
  • Avatar
    Jacqui  Mar 21, 2016 3:06 PM
    Absolutely I relate to all of this! Very frustrating and extremely embarrassing too
  • BethZ   Mar 21, 2016 3:48 PM
    Thanks for your honesty. I've had both bladder & bowel mishaps in public. It happens so suddenly. I've learned to pay attention to the very first subtle sign from my body to find a restroom. We need to share about these issues more!
  • Martyn   Mar 21, 2016 4:47 PM
    Sue has urethral catheter which is brilliant and so easy to empty.
  • J J   Mar 21, 2016 5:34 PM
    I know all about the incontinence.. I'm not to the point of losing it when I am out.. almost tho.. but I'm at the point of next month going to buy some of the pants to wear under my clothes.. so if I do.. no embarrassment.. I agree with the meds having side effects.. I don't like them either.. and why I am not taking anything anymore.. still have some side effects, however..
    Good luck to you.. You sound like you have it under control!
  • Daren Fry   Mar 21, 2016 5:37 PM
    I'm having Botox in the wall of my bladder to try and help me with this problem
  • Bob Ducharme   Mar 21, 2016 9:00 PM
    Excellent blog, My Wife has been dealing with the symptoms of PPMS for yrs. so I know what You are going through with planning...
  • Kimber   Mar 21, 2016 9:05 PM
    So good to know that I'm not alone in searching out bathrooms EVERYWHERE!
  • Judy   Mar 21, 2016 10:04 PM
    I feel your pain, I have the same issue. If I take anything to help, I end up with a bladder infection.😳
  • capitolcarol  Mar 22, 2016 12:01 PM
    Hi, I can certainly relate. I have urinary and bowel problems all the time when I'm at home. Then, I always wear Depends when I go out. Also, if things seem to be backed up, I will use an urethral catheter which helps quite a bit.
  • Dawn   Mar 22, 2016 12:20 PM
    This one hit home with me. Peed my pants walking the dog, walking to my car from work and playing games with my family (Laughing a lot). Thanks, good article.
  • Paula   Mar 22, 2016 12:42 PM
    I self catch. At first I used a mirror but now I just hmmmm 'stick it in' and empty my bladder. Bum bam boom done and I am good for several hours. Hope this helps others. Also after coffee we all have to go now, so I catch more often with caffeine.
  • Ingrid Carignan   Mar 22, 2016 2:55 PM
    I've had MS for over 30 years and have dealt with looking for bathrooms up and down the East and West coast. Having to go 10 seconds after I just went. 22 yrs ago my Gen Doc told me ever try catheters? THAT was my salvation. End of most of my UTI'S. About 2 yrs ago I got BOTOX in my bladder. end of most of my accidents. Not saying this is everyone's answer but it is an option, BTW also botoxed both legs eliminated MOST of my leg spasms!! Ask doctor if it would help!
  • Nikki B   Mar 22, 2016 3:17 PM
    Yes, these are real issues!!! I try not to let it keep me from my adventures. Moderating fluid intake is essential. But i've been living all around Africa on and off for 15 years. Actually the worst is that I am a teacher and i often have to race out in the middle of class and make a dash to the toilet - of course, dashing anywhere is also an issue - sort of a hop/skip/run kind of fast hobble! My students are super understanding and we try to have a laugh when i get back!
  • Avatar
    tcarr42868574  Mar 22, 2016 3:24 PM
    I keep "emergency Jeans" in my car just in case. Had bladder incontinence once and that taught me to do that
  • Betty   Mar 22, 2016 4:34 PM
    Thanks for sharing. I know too well how embarrassing it can be not to have control. I have a bigger problem with explosive diahrria. When I am aware my bowels are going to be a problem, I always wear depends and often don't leave the house. I have been advised to use pro-biotics as well as miralax. I know it sounds counter intuitive, but it seems to help. Good luck


    Take
  • Denise   Mar 22, 2016 6:54 PM
    I can relate totally to your incontinence issues. You say you travel with an empty gallon bottle in your car. Did you know they now make urinals special for women? They have a wider mouth so you don't have to put all the pressure on your legs while you take aim. I am an avid fan of Poise, which I wear almost all the time, just in case. I have done everything recommended, except catheterization, and I don't know if I would be able to do that. But I may have to try. Good luck to you!
  • Carolyn Cordon   Mar 22, 2016 8:44 PM
    Thank you for your honesty on this less than lovely subject. When we find ourselves prone to effects we thought we were over for our lives until the very end perhaps, incontinence can be an unwelcome new thing from MS. But when you can learn that peeing your pants is another thing you can deal with, with at least some semblance of dignity, well, we can congratulate ourselves for being wonderful!

    Pads and liners are welcome additions to our lives, and the adage of "Go before you go!" is one I am trying to always remember ...
  • Mary MS   Mar 23, 2016 11:12 AM
    Thanks for all the comments cause it helps to be understood!, I always wear Poise when out cause when my bladder makes the decision to pee...it does not ask me first! At times once my bladder decides to completely empty, I have no control. Bowels too, they have a mind of their own and when they decide to empty...they do,,,!!!!
    I believe my brain says Watch Out..a tiger is approaching (fight or flight) so you better empty bowel and bladder....so you can run faster to get away!!!!! Lol...I have not seen that tiger yet!
  • Gerri   Mar 23, 2016 11:18 AM
    I so agree as I have been through the very same experience. I now wear diapers every day and they have been a god send. I do not need to pee in a bottle, I just relieve myself in my diaper because when it comes I have no control. The diaper is now my best friend. Try diapers and you'll experience a brand new freedom.
  • mhinze07  Mar 24, 2016 12:48 PM
    Oh yeah, when you gotta go you really GOTTA GO...
  • happydisabledmom   Mar 26, 2016 4:50 AM
    Grin chuckle
    Thank you.
    Thank you.
    Thank you.
    Thank you.
    I thought I was the only one.
    It feels good to laugh about it.
  • Patty   Mar 26, 2016 10:44 AM
    Oh my gosh I can so relate to this! All I can say it depends are my friend! They help me not to worry about an accident anywhere I am especially at work. Thank you Kellen for posting this relatable subject.
  • Amy Diaz   Mar 31, 2016 7:43 AM
    I can relate. When all of this started, I could barely leave the house! It was awful and frustrating, to say the least. I talked to my ob/gyn, had a test done, and have gone thru a series of meds but I think (and hope) we have finally found one that works. So, those of us inflicted with MS...just keep moving forward!
  • Jackie   Mar 31, 2016 7:59 AM
    Great post. And yup, me too!
  • Shelly Burnett   Mar 31, 2016 8:20 AM
    Thank for writing this..it still has been embarrasing to me to admit to my doctor...hopefully your "article" will make me "brave"
  • irenego  Mar 31, 2016 9:37 AM
    I tell my friends that their bladders are wrinkled and mine isn't because I have botox injected every 8 or 9 months. I still wear some protective pads, but it I actually stay on a bathroom schedule, there are no problems. The botox stops the spasms and seems to enlarge the bladder. If I am out and about, I try to get to a bathroom every two to three hours, just in case.
  • Christie   Mar 31, 2016 10:18 AM
    I totally understand. I have been living with ms for 13 years and have had my fair share of accidents in public. I now wear depends with a tena pad every day. It works. Don't have to worry about having to race to the bathroom anymore. Especially in walmart, where they always seem to be cleaning the bathrooms whenever i have to go.
  • realmushroom  Mar 31, 2016 10:39 AM
    I had to leave my job because I couldn't go when ever I needed to. Not blaming anyone just the job I was doing didn't allow for the instant breaks I needed.
  • fred gremlin   Mar 31, 2016 2:32 PM
    Kellen,

    I was first diagnosed with M/S in 1965. Please consult with your doctor about using intermittent catheters. They will allow for you to choose the WHEN/WHERE of emptying your bladder. The peace of mind which that single decision may give you is priceless.

    I commend you and your spouse on the courage to share your tribulations!

    KEEP THE FAITH...

    Fred
  • roger cook   Mar 31, 2016 3:11 PM
    Men do not need to stress about Blazers incontinence, they can wear a condom catheter, such as the Urodry product. I have worn one 24 hours a day for over 5 years. For bowel incontinence, I use a laxative suppository to have a bowel movement when I want it.
  • monica   Mar 31, 2016 3:36 PM
    Thank you for sharing, I am so glad I am not alone! I make myself stop and use the restroom every couple of hours to avoid mishaps -
  • monica   Mar 31, 2016 3:36 PM
    Thank you for sharing, I am so glad I am not alone! I make myself stop and use the restroom every couple of hours to avoid mishaps -
  • keithjohnston  Mar 31, 2016 10:06 PM
    Yeah, incontinence is terrible and terribly embarrassing. Great, honest thoughts and experiences you shared and you are right in that you are not alone! I get tired of the drugs, and want to explore Physical Therapy options to improve strength in the pelvic region, to better control muscle function. In the meantime, I guess my dog and I will share a pee pad!
  • Tammy   Apr 1, 2016 1:40 PM
    I highly recommend Botox injections into the bladder to eliminate urgency, frequencies, and accidents. I had 100 mg with a total of 20 injections into the bladder wall on January 20, 2016. In three days, no more diapers, no more accidents, able to go at least four hours in between going. I had tried the pills for bladder spasms, but they lowered my blood pressure and caused other issues. I was already cathing before the injections, but that would last about an hour before the urge or accident would happen again. With Botox, I call the shots on the time and place to go. Leaving home or even being at home and still having accidents is never traumatic or a problem anymore. Talk to a urologist about getting Botox injected into your bladder. My bladder no longer rules my life! My PPMS gives me other problems, but check the bladder off my list!
  • Laraine   Apr 1, 2016 5:46 PM
    Having MS and a neurogenic bladder I was fortunate enough to be part of an Allergan study of Botox for your bladder. It met FDA approval and is available for the general population too
    Find a urologist in your area who does this procedure I get at least 9 months of relief from this problem after this treatment. possibly contact Allergan for Drs in your area. This has helped me immensely
  • Boris   Apr 11, 2016 2:28 AM
    I got my car windows tinted and keep a supply of travel john's purchased through Amazon, tissues, and a change of clothes, if needed. My backseat is a traveling restroom and must more sanitary than a public bathroom!
  • Ingrid Phillips   Apr 14, 2016 8:04 AM
    I struggle with bladder problems too due to Primary Progressive MS, I try to drink small amount of fluids (especially at night), avoid caffeine and I now use Poise or Always pads for leakage because sometimes a rest room is not near or because I cannot walk fast enough (cannot left or move right leg only drag it) to get to bathroom. I have had mishaps in the past which is why I got the pads even though felt embarrassed at the store never thought I will be using them at age 49.
  • Kristie   Apr 21, 2016 8:13 AM
    I have subscumbed to using Poise type pads. It is my only guarantee that I don't embarrass myself. My latest and truely embarrassinng one is pooping in my pants. Thank God the pad kind of helps there. In the last six months I have thrown away so many pairs of panties. I no longer my T-backs. I do not look my 57 years of age but in those instances I sure feel it. I have given up dating. It is too hard.
  • Kristie   Apr 21, 2016 8:13 AM
    I have subscumbed to using Poise type pads. It is my only guarantee that I don't embarrass myself. My latest and truely embarrassinng one is pooping in my pants. Thank God the pad kind of helps there. In the last six months I have thrown away so many pairs of panties. I no longer my T-backs. I do not look my 57 years of age but in those instances I sure feel it. I have given up dating. It is too hard.
  • Barb McClain   Apr 25, 2016 1:38 PM
    I enjoy reading these articles of other peoples "adventures". It is comforting to know that you are not alone. Each one of us is different yet we are alike. I have 2 sisters and all three of us have MS. Trick is to remain positive and know that each day is a blessing.
  • Barb McClain   Apr 25, 2016 1:38 PM
    I enjoy reading these articles of other peoples "adventures". It is comforting to know that you are not alone. Each one of us is different yet we are alike. I have 2 sisters and all three of us have MS. Trick is to remain positive and know that each day is a blessing.
  • Holly   Apr 27, 2016 6:17 AM
    Although I am twice your age, it was still a shock to wake up in a puddle of urine two nights ago! (Thankfully I had the foresight to put a plastic cover on my mattress several months ago.) I'd have preferred to keep the entire incident to myself but because I had a house guest there was no way to hide the 2 a.m. shower or the trips to the laundry room, etc. So, I "came clean" so-to-speak and decided to announce the first time bed-wetting to many family members while I can see the humor in it--seems much easier than trying to hide or keep secrets.
  • Ed   Apr 28, 2016 9:16 AM
    I've been dealing with this, off and on, since I was diagnosed in 1980. I worked full-time, until retiring at the end of 2012, and have traveled the world.

    About two years ago I did something that handled the problem for me: I gave up wearing regular underwear and now only wear Depends Real-Fit for men. It's incontinence underwear that fits, and feels, almost like real underwear. I have no connection with the Depend company but wearing this item allows me to travel without worry or embarrassment. It's well worth the $1.50 or so a day that it costs. I'd suggest checking it out.
  • John   May 4, 2016 4:06 PM
    I keep a small pouch in my walker with a pair of undies, some scissors and wet wipes, just for those occasions. It doesn't help so much with pee, but if the other happens, you can cut away the bad ones (really difficult for me to get them off while sitting on the toilet), wipe up and regroup. I'm sad to say I've needed it more than a few times.
  • SusanB  May 24, 2016 11:14 AM
    Thanks for sharing. I'm right there with you. I never dreamed I'd be the one wearing the diapers when we finally took our kids to DisneyWorld. If I can make it to noon without peeing myself - it's a great day!! Thanks again for sharing.
  • Avatar
    Jan-Martin  Jun 13, 2016 11:23 AM
    I could never watch the sellf-cath ads on TV-eeeewww! But after a urinary tract infection almost killed me last October, the urologist said interferon for 20 years has weakened my immune system and I'd be on a Foley catheter forever. Second opinion doc said self-cath. EASY! Still wear a just in case pad, but aside from a 5 minute bathroom break 4 times a day, I get by very well!
  • Mary kanter   Aug 24, 2016 7:28 PM
    Thank you not only pee incontinence. Number 2. Scary. Have been diagnosed with neuropathy.
  • Heather   Mar 5, 2017 9:16 AM
    Such a common problem with having MS. I had many accidents at home and in public. So stressful. About 20 years ago I learned to self catheterize, it's easy, in and out. I got back control of my life, no longer worry about where is the washroom. So in combination with Oxybutynin and Desmopressin for night time i'm in control again. Hope this helps someone.
  • Avatar
    mreaney  Nov 11, 2018 4:28 PM
    Been there: done that: got the T-shirt.
    On top of the MS I'm also an old dude with all the attending prostate/urinary problems. So I don't know which is causing what. It seems to come on me in streaks, so I usually have a Depends near at hand that I can switch to in times of need.

    As you have said, there is medication that your doctor can give you that weakens the contractions of the bladder. Of course, I don't remember the name just offhand, but it is fairly common and your doctor should be able to put you onto it. Kind of a "chill pill" for the bladder. Works well for me with no side effects. ( and I am prone to them, as you are)

    Hang in there, it's always something.
    Mark
  • John Richardson   Nov 15, 2018 11:13 AM
    Understand this invisible symptom very well. All the best to every one of us.
  • vicentecruz67  Nov 15, 2018 11:25 AM
    Muchas gracias no estoy solo
  • Loretta Oswald   Nov 15, 2018 12:10 PM
    Thank you for sharing your story! It helps to know there are others out there dealing with some of the same issues I deal with. Sometimes I forget that I’m not alone with this disease. My family is very supportive but because I don’t have a lot of outward signs of MS they tend to sometimes forget that I even have MS.
  • Janet   Nov 15, 2018 12:11 PM
    that's why Poise and now Always have products to save you embarassment, frustration, and smelling bad! It does not have to be a huge pads. Try different sizes for different activities. I wear a 4 drop pad for walks with friends or long car trips. I wear 3 drops for short activities - going to church, shopping, etc where I know where toilets are available. I wear 2 drops around the house and overnight just to catch the drips so my clothing does not get funky. It has been a 10 year journey to recognize when i am needing what size -- and my bowel status plays a very big role! Keep notes for yourself when you are most incontinent.
    Finally, I JUST discovered Always. They keep you dryer and never smell!
  • Henry Kuechenmeister   Nov 15, 2018 12:24 PM
    I've been living with MS for the past 9 years. It was rush rush at first and now using Depends whenever I go anywhere especially taking a flight someplace and taking Trospium Chloride everyday has made my urinary situation manageable.
  • Melinda   Nov 15, 2018 12:35 PM
    I can totally relate. I have tried all the incontinence meds, but none worked for more than 1 week. Was told it is just something else that I just have to live with because I have MS. Now I wear both disposable underwear and pads together just to cover for the 1 or 2 hours between. I don't drink that much (doctor tells me I don't drink enough), I may feel it when I have to go but when I exert energy to get up from my power chair it opens the gates of hell, and all pours out. I was told my only other option was Botox injections and that needs to be done every few months with no probability of whether it would work or not. And I seem to be allergic to everything so I don't want to try to find out the hard way that I am allergic. I was told using a Cath is not an option. So, yea, I understand.
  • Peter   Nov 15, 2018 12:37 PM
    I have ppms and can remember going and knowing were every toilet down town wife said here goes again.
  • Janet   Nov 15, 2018 2:54 PM
    Thanks for the post. I can certainly relate. Even at home I sometime either wait to long or just not make it.
  • Joe Richwine   Nov 15, 2018 3:09 PM
    I can totally relate. I've tried all of the drugs. They didn't really help and the side effects were awful. The my neurologist suggested Botox injections in my bladder. What a quality of life changer! I was already using a cath but now I can go hours and pick when (and where) I go. Fluid gathers in my legs during the day so at night I've been using a Foley catheter and I don't have to get up and down all the time to go. The insurance company doesn't like paying for 30 Foleys a month so I'm having to battle that but it is still better than getting up (risking falls and disturbing my wife) 3 to 5 times a night to go. Find a Urologist that does the Botox injections and get your life back!
  • Carol Ingram   Nov 15, 2018 3:46 PM
    Looking on the bright side when I went fishing last year, I was able to pee in the water something I never could do before MS.
  • Pete White   Nov 15, 2018 4:26 PM
    Your post was dead on the mark. I come in looking for the rest room concerning mishaps they are two many to count. Thank you for putting the light on this matter.
  • Neal Colingham   Nov 15, 2018 4:26 PM
    I have had MS since I was 19 I am 63
    If you can just start using a catheter
    I balked at that for years but after accident after accident I just caved and started.
    It was the best thing ever your bladder is finally empty.
    This gives so much freedom from flying to long car trips.
    My bladder is no longer an issue.
  • Suzanne Harkness-Wood   Nov 15, 2018 4:50 PM
    I understand completely. By age 54 I was using daily incontinence panty liners, carrying a set of extra clothing in the car (just in case), and using meds for urgency and frequency. Those meds eventually became ineffective, pelvic floor strengthening wasn't efficacious, and I very grudgingly tried Botox in the bladder, administered by a highly skilled urologist who was one of the original pioneers in this usage. I now get it done every 4 months with very good results. Unfortunately, I also developed neuropathy of the urethra, which is extemel painful when it decides to act up. It's somewhat like having a sharp hot pinecone shifting around inside the first few inches of the urethra accompanied by intense urgency and frequency - not fun. When it acts up I now simply instill a small amount of xylocaine with a special applicator tip and things calm down. Hang in there!
  • Stephen T Ferguson   Nov 15, 2018 5:05 PM
    My wife has MS and uses a wheelchair, now our big problem is that when we go out family rest rooms are few and far between she needs my help transferring so we tend to stay home a lot.
  • Leah Godsey   Nov 15, 2018 6:54 PM
    I feel your pain! This has been happening to me for years. Not only bladder but bowel incontinence. I have gotten to work, not made it to the bathroom and had to turn around and go home. Makes you feel like hiding.
  • Debbie   Nov 15, 2018 6:58 PM
    I had gone through many of your issues. A couple years ago, when I had my right knee replaced, I lost a lot of feeling in the right foot and notice troubles completely voiding my bladder. Nerve tests were performed and nothing wrong was detected, so as usual Docs blame my changes to MS. They said I may get these working again. But I have to be more careful walking and I have to catheterize all the time. So from one extreme to the other! I also lost my care givers over the last couple years so I'm on my own with PPMS. I am an amazingly strong person and enjoying my life!
  • Kim Donoghue   Nov 15, 2018 7:45 PM
    So Nice to hear your brave announcements, its so great to hear how fearless you are. I am much lower on the spectrum but a lot older than you and I cant talk about it to any one except other females. So Thank you for giving us all a voice its very appreciated and heart warming Good luck and happy travels
  • srob55  Nov 15, 2018 9:22 PM
    I know what your going through. RRMS TO PPMS
  • srob55  Nov 15, 2018 9:30 PM
    I've got to the wonderful point of nocturia so now I have to wear adult diapers all the time. So thankful for my wonderful loving husband!
  • andrea   Nov 15, 2018 9:47 PM
    this is where i’m at now. so frustrating because i have a bathroom in my room literally 5 steps and it’s like a marathon sprint... i’ve had mishaps coming home from being in public, so luckily only my neighbors would have seen this disaster. thankfully they’re all old and afraid of looking out the doors lol. thank you for this. at 28 this is not easy
  • Lisa Segarra   Nov 16, 2018 4:37 AM
    Thank you- I am a caregiver and sometimes don’t understand things from his point of view. It is slowly separating us, but I am trying to understand all elements of his behavior and this really helped. The doctors on this video were very explanatory and gave me a bigger picture in regards to what he might be going through.
  • Beth   Nov 16, 2018 8:14 AM
    Incontinence was my first symptom (that I noticed) that something was wrong, but I chalked it up to having had 2 children and being 55. Wrong! 11 months into my diagnosis of MS, incontinence is my first sign that I’m going to have a relapse. So I keep pads in my purse and car at all times. But I’ve had a million accidents, at home and in public: “Mommy, that lady wet her pants!” Oh brother....
  • Larissa hernandez   Nov 16, 2018 9:22 AM
    It's extremely embarrassing my first time ever was the other day in was in a government car going to my appointment. I started an the guy looked back I was so embarrassed omg good thing it was on my way home tg
  • Tammy   Nov 16, 2018 11:26 AM
    Yes! I can do relate. I’ve had this struggle for years before diagnosis. When my flare got so bad I finally went to the emergency room, I wet myself in the parking lot and turned around and went home to change, only to call EMS when I got home thinking I was having a stroke. I have found certain things are triggers. I avoid those things mostly (occasional ice cream treats can be worth the risk). Did you know that physical trainers have a book that lists all possible conditions for clients, including MS? And one of the items mentioned in this book for trainers to be mindful of is the client not having enough water intake because of bladder control issues. And to think I went years attributing my problem to other things.
  • Ingrid   Nov 16, 2018 1:36 PM
    I can relate to the bladder issues since diagnosed in 2015 with Primary progressive MS Had to go to a urologist for help, wear pads all the time. The nights are the worst when get out of bed from sitting to standing have leakage before reach the bathroom
  • Erin   Nov 16, 2018 2:45 PM
    I love this and I'm with you. I've started bringing a change of pants/underpants in my purse like a preschooler. You are not alone.
  • Debbie   Nov 16, 2018 6:37 PM
    II don't feel so alone now. I'm take tolerating tablet works good but dries ur mouth out.
  • Mary Anne   Nov 16, 2018 9:02 PM
    I’m not alone!!! I have had bowel
    Issues, thank god I’ve always been
    by myself. Well that changed...my sister helped...how embarrassing!!!
    Sometimes I can be just feet away
    From the WC & it just Comes : (
    What a mess!!
  • Robin Shoblock   Nov 16, 2018 9:40 PM
    I emphasize with you. Happens to me too, even the bowels. It's so embarrassing:(
    I did start taking meds for it and it seems to help to some degree; may have to try Botox next. God bless you for sharing.
  • Lynne Hubbard   Nov 16, 2018 11:27 PM
    Hi all fellow MS counterparts. With regards to MS and medical, I could really do with some help. I will be moving from Sydney Australia to North Carolina early next year. I am struggling to find out if intermittent cathaters are covered by health insurance. I believe it depends on what plan you have but if anyone has any advice I could really do with some help please? Thanks in advance, also looking for a email pen pal with MS for USA advice, let me know if interested please.
  • Sheryl Brown   Nov 17, 2018 6:19 AM
    Thank you for sharing your information.
  • Sarah King   Nov 17, 2018 6:59 PM
    Thanks for sharing this story! I have the same problem and I just wear poise pads as well. But it happens and I’m ok with it!!!
  • Vickie Gagle   Nov 17, 2018 8:31 PM
    I am here to give an added shout out for honesty about bowel/bladder problems. I am a nurse with MS. Apparently, that helps me when it comes to being comfortable when discussing toileting issues. Or maybe I just enjoy discussing elimination issues! My husband is equally able to talk about such things and he can be really humorous about it, which I enjoy. I have never shared information about my disposable underwear or accidents and gotten negative feedback. My friends are all very understanding, patient and supportive. I would recommend starting to open up about this and just see what happens. I hope your experience is like mine has been and I bet it will be.
  • Vickie Gagle   Nov 17, 2018 8:49 PM
    Attention Lynne Hubbard: I would love to be a pen pal with you. I was diagnosed with relapsing/remitting MS in 1999.I am on Facebook so you can private message me there. I live in Indiana.
  • Jim   Nov 17, 2018 10:17 PM
    Was diagnosed about 1½ years ago. The increased incontinence thing bugs my wife more than it does me, she hasn't read up on it like I have, she was worried it's age-related. I worked in construction for years and had to manage incontinence urges before. If this is the worst I must deal with, I'll consider myself lucky.
  • Greg Milligan   Nov 19, 2018 9:16 AM
    My wife was diagnosed with MS about 30 years ago. For the last 20 years, she has suffered with incontinence issues such as this. About 3 years ago, she started having Botox injections in her bladder. This has been a miracle solution for her. It really worked when drugs and self-catheter was not working. She has to have it redone about every 9 months.
  • Tom Jenner   Nov 27, 2018 4:00 PM
    Kellen, Thanks for sharing the Bladder/Bowel stories. I'm a bit older but to be going through this absolutely sucks. I got hit with a massive flare-up about 2 months ago. I've been in a rehab since. Trying to learn how to walk again. I've found myself waking up in the mornings many times only to find out I've wet the bed. Just getting really tough to except. So embarrassed. To have a stranger bathing you. I too have Progressive M.S. I live outside of Boston. NORTHEAST