Has this happened to anyone else here? It seems my morning coffee combined with my Aubagio had me running for the bathroom, but I seemed to not make it in time. Sorry, it's gross, but I just wanted to post here with the hopes that others can give me their feedback.
Is it just me or has it happened with your bowels too? I know my bladder was getting worse, but now the bowels too. MS is the gift that just keeps on giving! I'm embarrassed but I thought posting about this accident may help my mental health.
Yes; I am embarrassed and ashamed. But, what can a girl with MS do? Misery loves company! Who else here has had those types of accidents too? SMH 👎😥
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donna0329
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Hi donna0329🙂.Yes it's happened to me too- nothing to do with ☕/meds. Unfortunately, it's all related to MS rearing it's ugly head. It already affects my bladder, what next 🤪🙃😜?
Hey Donna0329, how long have you been taking Aubagio ? I started taking it the end of May 2021 and for a brief time I was having trouble with that as well. I remember trying to take a walk in my neighborhood one morning soon after I started taking it and it was not good thank God only my witnessed the incident and I didn’t run into any neighbors on the way home. . And I think it was a coincidence, but I started taking some of those fiber pills that you can get from Sams Club or Costco whatever and everything kind of normalized with my system. I have no problem with that any longer. If it continues, you can reach out to the manufacturer of the Aubagio and they have a team that can help you manage that symptom.
Not on any DMT's, but yes, this has happened to me. Fortunately, only when I was at home and not very often. Even when the dog's the only witness, it's embarrassing! I did go through a bad spell of several weeks where it was happening often enough that I started keeping extra underwear and pants in the bathroom. It's not much comfort, but you're normal.
It's happened to me as well. I've gotten it regulated by using Benefiber, but still have the occasional accident. Don't be embarrassed, a lot of us have been there.
As the expression goes, s*** happens. Yes, it's happened to me, yes, it can be slightly embarrassing, no it isn't related to a DMT or a C. diff attack, and yes, yes, yes it's caused by that disease we all live (or try to live) with MS.
Probably a whole heap of not so big factors came together in a perfect (shit) storm - sorry - couldn't resist that one
Many people have it happen (including people without MS...) and you probably won't be able to pin it down to any specific cause accurately enough to absolutely guarantee it not happening again in the future. However - maybe consider the timing of your morning coffee - coffee is a major stimulant for some people, not so much for others, and isn't a problem at all for people who don't drink coffee (yes, there are some of those in the world... )
I had to tell a social security disability judge that I can’t work because many days I have to be close to a bathroom. I’m on Aubagio and I had diarrhea for six months, but it went away. I noticed now that stress, high temperatures/humidity, and sometimes for no reason at all, I trusted a fart that I shouldn’t have. My new saying is “Never trust a fart.”
Hello donna0329 I am going to be 56 this year with spms and completely understand what you are going thru. Don't be ashamed. Yes it is embarrassing and it has happened to me more than once. I try and stay away from any fat and greasy food. You aren't alone
This! This is one reason I am reluctant to travel to the Florida panhandle to visit my son! What if it happens while there? Or worse - what if it happens on the road? I am thinking about wearing a diaper on the road. You are not alone, Donna!
Once you have one autoimmune disease you're open to others. My "other" (so far and I'm hoping it's going to be the only) is collagenous colitis. Basically you have a lot of diarrhea and you can't control it. The only way it is diagnosed is a Colonoscapy. There is a med that finally is available called Budesonide. When it's bad I take 3 a day. It can go down to 2/day a day finally 1. But it does take a long time to work. When I was first diagnosed with it the FDA hadn't approved it yet for this but finally it is. I used to live on Pepto. I was taking 14/day!
I am on Aubagio as well. (Well, the generic from Mark Cuban's pharmacy. So cheap! About $30 for a 90 day supply! Sure beats the $9,000 + for the brand name!)
So it may be an entirely different issue than MS. Good luck.
Yes this is normal. I have had this happen before. It is embarrassing when you're out and about. I had it happen in a restaurant one time . Fortunately I was ready to live. I threw my underwear in the trash and went home to clean up. I hadn't planned to go home but I had to tell my mom I needed to go home. I just didn't say why. I have never taken Aubagio or drink coffee. It's just MS. At least it wasn't explosive. I walk so slow that I have to start to the bathroom as soon as I feel a twinge. Even then I don't make it sometimes. And true you NEVER trust a fart. If I can feel I'm having trouble I try to stay home. But that's not always possible. I was at physical therapy this week and needed to go and had to wait for someone to get out of the bathroom. But fortunately he got out just in time. Mine is usually more solid but still what a mess.
Donna, the beautiful thing about our “community family “ is, this is a safe space! Yes, I’m on Copaxone and depending on what I eat, and my diet is 60% plant based, I synchronize the bathroom occupancy on some days! Mention it to your doctor and get his/her opinion. The best my friend. Blessings. NeeC
Hi donna0329, I have had the same problem. I have been in the emergency room pooping. Don't be embarrassed. MS can make changes in your body you never thought would happen. Hang in there you will be OK. 👍
I cannot believe I am reading this and somewhat feel relieved, as I had it happen to me only yesterday morning. The awful thing I hadn't even realised until I got out of the bed, I thought I felt blood and to my horror it wasn't.
I am now constantly checking, I have been having more trouble peeing and have found when I lean forward it comes out better but often have to push and now always have to check behind so to speak. The joys. The best way of coping, I have had to laugh it off. I am contemplating possibly buying a long urine protection pad for protection incase maybe. I've tried Tena in the past but that felt like a nappy, Always have bought out an incontinence one which is much thinner and discreet, I think I just need it temporarily when out for peace of mind. Between you and me I'm hoping it doesn't happen again, but who knows, MS is full of little surprises.
Thank you, Loveducks. You have given me a few ideas. We will embark on a 6-hour journey (1 way) this Tuesday. Because of your brave post, I am going to look into a discreet liner or something. Never heard of Tena, but going to Google it now. Blessings!
Hi Mollyabigail. I hope your journey went well and glad I could give you some ideas and hopefully you found something that helped you. I also keep a bucket in the car now as well, mainly for peace of mind, but I can't hold my pee in for a long time either, but don't get a foldable one, they do collapse easily not like stated by some reviewers lol. My therapist said as well, when we are stressed, which we are as we are embarking on a long journey it can make you urinate more which I never knew and feel the bucket has taken a load of the stress away and my pads. Take care xxx
We all agree that this is part of the MS. It's very embarrassing. I have Imodium AD with me every time I'm not going to be near a bathroom or on a long trip. I also wear depends during those times, Just in case! I've been on Aubagio for 10+ years. I haven't experienced this being apart of taking the medicine. Just a part of having MS. You're not alone.
Thanks, everyone, I feel better now, too! Glad you were brave, donna0329, I imagine a lot of us needed to read that!
I took interferon for about 20 years, had some leakage time to time, but ok enough. Had long lasting bout with the issue, and my neurologist changed my medication to Zeposia, not really specifically to help incontinence, but because my insurance made that decision of the drugs in that class. After an MRI there were new lesions on my cervical spine that pointed to trying a new medication. So that was that. Unfortunately the Zeposia really affected my mental illness for the first 9 months of treatment, but almost 2 years in, I’m doing better.
Still hate being sick with MS, but at least I know the culprit! Never trust a fart, friends. Good advice!
I hate when it happens out in public and there is nothing you can do. If I shat my pants then I usually pee my pants to. Hard to explain why you have been in the restaurant bathroom for an hour trying to clean yourself up.
OMG, do we have to lose all our dignity over this crazy life.
Just too let you know but it happened 3 times last week.
Oh yes . Sometimes it makes me not wanting to go places. Feel like the bathroom issue rules my life. I did see a GI Dr. & she gave me medicine. It helps.
Definitely not you or the meds, following an episode I had in 2020, where I was horrified to discover I had not just passed gas! It was after that incident I was re-dx'd! At any rate my incontinent clinician provided a list of items I should greatly limit myself to, coffee, juices, etc, all faves for me, maybe others! Perhaps your situation is similar which is why they advised against them. I can say I haven't had another "really bad episode" when I have stayed away from advised items!
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