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Muscle Weakness - Bathroom Issues
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Muscle Weakness - Bathroom Issues

Hi Everyone,  Does anyone else have muscle weakness issues that causes them to not be able to use the restroom?  Most of the time, I don't have enough strength to push it out. I went to see a gastroenterologist about it today.  My neuro had said to me that it was probably related to MS, but I wanted to make sure nothing else was going on.  

Previously, about a month or so ago, I had my first PT session for MS. During his exam, he found that my upper thigh muscles, particularly my inside groin muslces are really weak. They had a strenth of 2.5 out of 5 (in-between muscle movement possible but not against gravity & resistance).  And sometimes at night when I'm in bed, these muscles will just spasm away, like I was trying to make them work when all I'm doing is just laying there.

Anyway, the gastroenterologist today told me after my exam that it's like my body has forgotten how to go. My mind is telling me to go, but the muscles just won't work.  She is sending me for physical therapy in that area for bowel dysfunction. Has anyone else tried this and does it work?
If you don't want to respond to this post, then maybe you can send me a private message.

Thanks everyone,
Kelly
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Hi Kelly.  I hope PT can be one part of your solution for what is likely a chronic condition.  It is certainly worth trying but as a PwMS you know that your brain is having a hard time getting the demyelinated nerves to get messages to your muscles.  If the nerves worked better than so would the muscles.  Sometimes physical therapists have nifty tricks and we can learn to use muscles differently than we have in the past.  

In general I have found that if I stick to a PT program I will eventually get some results.  The usual problem for those of us with MS is that it takes greater than average program dedication and a willingness to wait for improvement to become apparent over time.  It's easy to give up too early.  I've done that myself more times than I really want to admit.

Check this out with the PT and your doc but it sounds like you might need some extra help right now.  You've had recent surgery, are just starting the PT program, your stress levels have been up there for a while (right?) and (frankly) this hasn't been a spectacular year of MS treatment success for you.  You've been beat up on plenty gf.

Bowel routines usually have common themes but they are NOT all the same.  From what you describe I wonder if you would do better with a rectal stimulant.  They work locally to get the rectum to push the stool out and can be used daily if necessary.  There are a variety of suppositories used but a gentle Fleet Babylax (containing less than a teaspoon of fluid) is sometimes enough to get the rectum stimulated into reflex action.

The small dose of mom's magnesia you are trying might do the trick but it doesn't sound like YOU necessarily need a systemic laxative.  A softener maybe but laxatives taken by mouth could take you to the land of incontinence if you already have a history of frequent elimination.  You need help with the final evacuation process.

Besides, we always need to keep in mind that no drug we use is without side effects.  PwMS need many drugs.  They are life savers, life extenders and life enhancers.  They aren't bad but there isn't a single one that doesn't carry a risk/benefit trade off of some sort.  In general, local application = less risk and side effect.

When bowel elimination is a continuing or out-of-control problem, a physiatrist (physical medicine doctor) is usually your best bet for getting an effective bowel routine established IMO.  Their practice is all about getting people functional and many are used to dealing with the problems spinal cord damage causes.

Kudos to your GI (wo)man though who knew better than to pat your head and send you on your way with "You're fine" type platitudes.  I so wish it was easier to get these med brains to work TOGETHER!

For anyone else reading along, other aspects of this problem that may be of interest to you were discussed here: http://www.medhelp.org/posts/Multiple-Sclerosis/Constipation-Severe-stomach-pain/show/1555931

Hope you are feeling better every day Kelly.  Thinking of you.  
Mary
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21 Comments Post a Comment
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HI Kelly,

Sorry to hear about the newest symptom. I have had it and the opposite as well as the nerves are playing tag with each other.

If I get constipated , I use Miralax (or much cheaper generic) and it works like a charm in no less than 3 days just as promised on the bottle. Approved by my GI and PCP.
'
With your family and personal history, I would go to the PT and make sure  it is what it is. PT can be very astute. YOu will probably be put n a bowel training programming and perhaps a biofeedback program.

I hope things g well. Let us know hoe tings work out.
Ren
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That's a heck of a problem to have!  I have my own problems... it seems that things move too slowly, so I take stool softeners, and once a week I have to resort to milk of magnesia.  I'm getting real sick of it, but I don't know what to do.  I asked the doctor and that's what he recommended, but he didn't have any long term solutions.
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I already have my appt set-up for Monday of next week.  I'm OK with going to therapy or whatever I need to do.  (I'm the type of person that probably gets more upset when other people that are close to me are having health issues).

Since my surgery, I have been taking the stool softeners every day, because I'm not supposed to strain - it may rip may stitches. And that would NOT be fun. The stool softeners barely even work and I've been drinking a ton of water, too. The gastroenterologist did say that I could take a teaspoon of milk of magnesia every day for the rest of my life. She said that it's been around for 40 yrs & it's totally safe. I've never tried it before. My gynecologist said that I could also try drink a small glass of warmed prune juice. Once again - something I've never tried.  You know, we already take a ton of meds, I'd really like to go the natural route if I can.

I go every day, so it's not a problem with that. It's a problem that once it's ready to be released, my stupid body doesn't want to give it up.  :-(  
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1322693_tn?1308157496
I'm sorry you are dealing with that. I too have that issue. I go through phases of not being able to go. I feel like I have to but nothing happens. The muscles don't want to work and pushing does nothing.

I have. Brought this up to me dr several times and have tried all sorts of things because it can go 4 or 5 days before I am so filled up I finally go.

I have started on stool softeners every day and they seem to help a little. Going to keep it up and maybe things will get better.

Good luck with everything. Would be interesting to hear about any excersizes that can be done. Not sure what when it seems like the signal to that area turns off like a light switch.
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I went through a bowel training program while in the hospital.  They do recommend stool softners twice daily.  I take four on day one.  Six on day two.  (Halfed morning and evening)  Day three is big guns.  I have a precription for Lactuloe 10mg/15ml Solution.  I begin with six teaspoons.  By midafternoon if it hasn't worked again.  I have never had to use it more than twice on day three.  The stuff tastes awful but it works.  

For those that have had a chronic problem, you might check with your neuro about a training program.  The meds I use today are not the same meds used to begin the program.  It took nearly two weeks to find what did work for my system and even after I returned home (had been 30 days in the hospital), I still needed assistance to get the meds down to a science.

I do know in the beginning of the program it was a shock to find how much I had not released but sure won't go into detail here.  It is why you need someone that is used to working with spinal cord injuries to guide you through a program.

I would be happy to help any privately on exactly what was done via private message here....but I am only speaking of those that have a chronic condition...like not releasing but every two weeks or more.

Hope this helps someone.

Sumana

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That should have been Lactulose.
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352007_tn?1372861481
I truly feel for you on this one.  I hate to admit it on a forum, but I admitted to my initial MS Specialist that when I have to defecate, I have to squat on the toilet, knees bent to increase that abdominal pressure.  Ive been doing this for years.  Sometimes I have to massage my stomach to help myself.  


Yes I know weird.

Since you've just had the surgery, it is to my surprise that the surgeon did not order a bowel regimen for you.  Colace or stool softener is just not going to cut it if they do not want you to exert too much pressure or strain while attempting to eliminate.  

Lactulose can be a bit excessive and cause diarrhea which then will lead to hemorrhoids.  Something you don't want..  Purchase Miralax at your local pharmacy store would be a smart thing to do.  When mixing, make sure you do it with plenty of water (at least 8 ounces).  It is suppose to help propulse the ttool through your GI tract and aid the stool to hold more water.  Normally people will go within one to three days as Rendean stated.  

Frankly unable to eliminate due to fear of straining ripping your stitches or decreased muscle tone or in your case, possible MS causes, can be a pain in the *** (pun intended).  Increase your fiber in your diet, drink, drink and drink H20.  

If Miralax should cause any unusual tummy cramping (painful) then stop but it is considered a safe product to help you eliminate in conjuction with your stool softener.  Are you taking it 3 times a day?  

I'm sure with your pain issues that you were not moving as much as you normally would, but then with the fatigue I suppose you weren't running marathons either huh?

I hope this helps in some small way.

Love and hugs to you my friend,

Lisa
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1394601_tn?1328035908
"Lactulose can be a bit excessive "

That is why it is done in a hospital setting under the care of medical professionals.
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352007_tn?1372861481
She's not in the hospital.  She's at home and in a clinical setting, we've used lactulose for patients who have high ammonia levels mostly.  Other bowel regimens were initiated rather than lactulose.

Just sayin'
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If you are working with spinal cord injuries here is a place that perhaps you can share information......learning from each other.

http://wuphysicians.wustl.edu/dept.aspx?pageID=28&ID=4
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Hey Sumanadevii

Im not here trying to undermine what you were saying...if that is the way I came across, I apologize.

Im not here to argue with you about who knows more or who has the most links to prove what they are saying is the "correct" way.


Have a great day!

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1225331_tn?1333369369
Thanks everyone for all of your insightful suggestions!

lilmiss1999, first of all, nice Mustang in your pic. :-)
I hope the stool softeners help you. After I start my PT, maybe I'll post again, if they've taught me anything that's helpful - i.e. exercises, etc.

Sumanadevii, wow, I can't imagine going 2 wks without going to the bathroom. You must have been in some serious pain by that point. Thanks for sharing your experience. Plus, that can't be safe. Since I can go everyday, then maybe your post can help someone else that reads it. At least they know they can go to the hospital & get help there, like you did.

Lisa, thanks for sharing what you've learned. I'm only taking one stool softener & drinking about 85-90 oz of fluid a day. Yesterday, I stopped by the store after my appt & picked up milk of magnesia. I also looked for some tasty (NOT) prune juice, but couldn't find any. We'll get some tomorrow when we (meaning Kim) goes grocery shopping. I did take a teaspoon of milk of magnesia last night before bed.
Most of the time, in order for me to go, I have been pushing up on my outer skin about an inch away from the side of the "exit." I've done this for about the last 6 months. For me, this is very odd, because I've always had the opposite problem of having diarrhea. I'd go maybe 6 or 7 times a day. They ended up doing a colonoscopy about 6 yrs ago, but didn't find anything (thankfully).

Thanks again,
Kelly  



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There was no pain.  Thus the problem.  Numb.  

The only problem experienced was heartburn.
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352007_tn?1372861481
FOS clan.  Imagine that. -smirks-

If you have no idea what FOS means.....go look at your note Kelly. :D


xxoo

Lisa
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Hi Kelly.  I hope PT can be one part of your solution for what is likely a chronic condition.  It is certainly worth trying but as a PwMS you know that your brain is having a hard time getting the demyelinated nerves to get messages to your muscles.  If the nerves worked better than so would the muscles.  Sometimes physical therapists have nifty tricks and we can learn to use muscles differently than we have in the past.  

In general I have found that if I stick to a PT program I will eventually get some results.  The usual problem for those of us with MS is that it takes greater than average program dedication and a willingness to wait for improvement to become apparent over time.  It's easy to give up too early.  I've done that myself more times than I really want to admit.

Check this out with the PT and your doc but it sounds like you might need some extra help right now.  You've had recent surgery, are just starting the PT program, your stress levels have been up there for a while (right?) and (frankly) this hasn't been a spectacular year of MS treatment success for you.  You've been beat up on plenty gf.

Bowel routines usually have common themes but they are NOT all the same.  From what you describe I wonder if you would do better with a rectal stimulant.  They work locally to get the rectum to push the stool out and can be used daily if necessary.  There are a variety of suppositories used but a gentle Fleet Babylax (containing less than a teaspoon of fluid) is sometimes enough to get the rectum stimulated into reflex action.

The small dose of mom's magnesia you are trying might do the trick but it doesn't sound like YOU necessarily need a systemic laxative.  A softener maybe but laxatives taken by mouth could take you to the land of incontinence if you already have a history of frequent elimination.  You need help with the final evacuation process.

Besides, we always need to keep in mind that no drug we use is without side effects.  PwMS need many drugs.  They are life savers, life extenders and life enhancers.  They aren't bad but there isn't a single one that doesn't carry a risk/benefit trade off of some sort.  In general, local application = less risk and side effect.

When bowel elimination is a continuing or out-of-control problem, a physiatrist (physical medicine doctor) is usually your best bet for getting an effective bowel routine established IMO.  Their practice is all about getting people functional and many are used to dealing with the problems spinal cord damage causes.

Kudos to your GI (wo)man though who knew better than to pat your head and send you on your way with "You're fine" type platitudes.  I so wish it was easier to get these med brains to work TOGETHER!

For anyone else reading along, other aspects of this problem that may be of interest to you were discussed here: http://www.medhelp.org/posts/Multiple-Sclerosis/Constipation-Severe-stomach-pain/show/1555931

Hope you are feeling better every day Kelly.  Thinking of you.  
Mary
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Coming in here kind of late, but big hugs to you, girl!

I have the combination of lack of sensation that I even need to "go" with when the blessed miracle occurs, I often get that amazing banding variation of the dreaded "hug" on top of it all. OOOOWWWWW!!

I've trained myself to go at the same time, every day, and I do go - every day.
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And that is what a bowel routine is all about!

It doesn't have to be DAILY regularity for all of us but several times a week regularity is certainly a reachable and healthy goal for everyone.  Even if constipation doesn't seem to be making us sick we usually end up feeling better with effective treatment.

Mary
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Thanks for the hugs!  :-)

Mary, I think you've hit the nail on the head. I agree that I may not need a systemic laxative.  I don't want my body to become laxative dependent.  However, I am in need of help for my final evacuation process.  Maybe  we'll pick up some Fleet BabyLax/Pedia-Lax today, too.  I really hope using these types of things - laxatives, suppositories, stool softeners - don't play around with my electrolytes.  Here's hoping that the PT on Mon will go well.....

Thanks,
Kelly

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Potty training?  OMG!  You should sell your ways of doing so!

I'll purchase!

We've got a millionaire on our hands!!!!  

(just teasing) :P

Mary, as always...you're a plethora of information and your right on the mark by stating to attempt to stimulate the rectal muscles may do the trick for her.  

(Tune in to see if Kelly goes! Hahaha).

I just know Miralax is consistently used in our hospitals here in NY if Colace 100mg twice or three times daily isn't working.  Sometimes MoM is used too.  Of course we encourage fluids (if the person doesnt have fluid restriction) and increase in activity...etc.

Anyhoo,  Happy P00ping everybody!

Lisa Lisa

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I'm back from my first bowel physical therapy session. The physical therapist was really nice.  The only thing we did this time is rectal biofeedback testing.  

She has assured me that I have quite a challenging problem.  
:-O   !!!!!
For this type of biofeedback, my muscle activity during relaxation is supposed to be about 1.5 - mine is between 5-7. I have way too much muscle activity in that area - ie way too much spasticity.

Then when I'm not relaxed and I'm "pushing,"  there's absolutely nothing - I'm still pretty much flat-lining with no peaks, no valleys in the biofeedback.  In fact, she thought that something was wrong with her sensors or wires and she played around with them and had me try again. Still nothing. I told her the gastroenterologist got the same results when she did my exam.  Hmmmm, what to do.

For now she's just having me work on kegel exercises, and we'll do more "research" next week.  She did say that she has had other MS patients with problems kind of like this and she was able to make them better than they were before the therapy.

Thanks,
Kelly        
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This is really interesting, even though I've been around the medical profession, I have never heard of PT helping with bowel functioning.    I'm glad you are with a PT that you are comfortable with.  

Very interesting in regard to the kegel exercises!  I think you have initiated an exercise I'm going to do myselfl, since I have issues with elimination too.  I don't think mine is due to spasticity like yours, but I'm sure something is better than nothing.  I hate it when I constantly have to squat on the toilet as if I'm in the great outdoors to help relieve myself using gravity and increasing pressure with massage.  Perhaps this will help.  One may never know!

Keep us posted to let us know if this is helping you!  I pray that this will make things better for you.

Lisa
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