The UK MS Society has an excellent brochure on this subject which can be read online at
http://www.mssociety.org.uk/downloads/MS_Essentials_25_Managing_the_bowel_in_MS.d9eaf79b.pdf
I hope it helps to understand the concepts and common nature of this problem.
Lulu
Thank you so much for bring this congestion problem out. Linda dx'ed
> Do they make something to help you push?
Err... I've tried so many different things. Pushing on my stomach with my forearm seemed to help - a little. But when things aren't moving, they aren't moving.
The most horrible thing I had to do EVER was to 'help things along.' After two days, I had to take matters in my own hands... so to speak. I won't go into details - if you want them, I can fill you in. I recommend a dishwashing glove and a lubricant like KY. And a high pain threshold, and a high tolerance for yuck.
I often had this problem. But, I found my problem was use of caffeine. After realizing that I need to drink at least as many non caffeinated beverages as cups of coffee or soda with caffeine the problem lessened a great deal. Drinking at least 3 large classes of water a day is important.
I have to come in here and be the defense for chemical stimulants in some cases.
First it is very important to keep the stool bulky and soft.
BUT, in the case of real lack of ability to push out all the softness in the world won't do it. Spinal patients often need a stimulant, often given at the sam time of the day in the form of a suppository or small enema, to create the reflex stimulation to get things moving. Heather was right on when she wpoke of the docusate mini-enemas. sometimes this is what is needed and for some people it is needed regularly. I dont want people to have a fear of such things or feel that they are always harmful. There are many people for which they are a total necessity.
To all of this I would like to add the use of a probiotic. These gut-friendly bacteria are needed to help the stool maintain all the right stuff - especially when there is upset like constipation, bouts of diarrhea, bloating and pain.
I second the need to be evaluated by a doc for the problems first. Heather is right when she reminds us that not all the problems we have after diagnosis are due to MS. when my right eye went blurrry I went several hours believing that I was having the beginning of ON, when actually the right lense had just fallen out of my glasses.
Docusate sodium is just Colace, the standard stool softener and can very useful in a daily regimen. This is the stool softener often used during later pregnancy. It has NO stimulant properties. The stimulation is the increased volume in the rectum, which causes a reflex urge to expel. Again, this reflex may be absent in people with severe neuro impairment. When you take this orally it does not have any stimulant effect, only softening.
No matter how embarrassed one might be in talking about this topic, we MUST discuss this with our doctors if we are having trouble. We also must follow the medical guidelines about colon cancer screenings.
We need to bookmark this discussion for the HPs.
Thanks, Heather!
Quix
Hi all, this is such a pressing conversation going on that I think we need to go back and remind everyone that we should not assume our constipation is caused by our MS.
Please everyone, if this is an ongoing or should I say not going problem, be sure to discuss it with your doctor.
We are so quick to blame everything on our MS, and that isn't always the case. A colonoscopy should be one of the first tests you have done to be sure there is no other problem causing the constipation. Despite all your horrible thoughts you may have, a colonoscopy is not the worst test you could have and it is over in a pretty quick period of time.
I can tell you to the exact day that a lesion hit the sweet spot for my bathroom habits - until that day I was so regular you could set a clock by my movements. Then one day it all went haywire - that was almost a year before my MS dx. Since that time I have read a lot and tried even more products to assist. Here is some of what I know and have tried:
water - keep drinking it- It is necessary to keep everything soft. Even though it may not seem to be working, don't give up on the H2O.
Forget the advice of setting regular times to train yourself .... reading the daily paper in the john may work for people with regular colons but not for those of us with neurogenic problems.
Work your way up with the chemical aids that may help - the gentler the substance the better. there are some very harsh ways to get immediate relief, but save those for desperate times. Something such as a fleet enema should only be a last resort.
Add bulk and fiber to your diet. There really is some wisdom to the *apple a day* thought and throw in some other raw fruits and vegetables too. Some people have success with psyllium capsules as mentioned above. Find a regimen of fiber that works for you and try to use it daily.
Stool softeners are also a necessity for many of us here and those are usually daily doses - Miralax seems to be a favorite, There is a generic prescription form named Polyethylene Glycol 3350 which costs much less. This will help to keep your system from producing concrete. Normally extended use is not recommended, but your doctor may override this, like my GI doctor has done.
If the above doesn't work and I get truly miserable, which on ocassion does happen, I keep a supply of Docu-sol (docusate sodium) mini-enemas on hand. This wonder drug has a one-two effect. It softens but also stimulates the colo n to contract to help with that desired push that so many of us lack. It works in about 30 minutes, but usually much sooner. There is also an oral version which I have not tried, but should look into. Interestingly, this product is listed as indicated for patients with intestinal neuropathy .
Well that is probably enough of a contribution about my personal habits - I hope it is of use to someone. if you need more details, PM me with your questions.
Funny how we have such problems - too much bladder stimulation, too little colo n action. Too bad we couldn't reverse them!
gotta go,
Lulu
Since we are being honest - and you are so right Quix and Heath, we do need to talk about it.... Do they make something to help you push? What about when you just "can't." Like Heather says, just difficult to finish, follow through, etc..
hi,
I know from reading here that MS must present even more difficult problems with GI motility and constipation. I dont have MS, but I take on a regular basis a product called "Fibermucil" . It is just pure psyllium husk with lactobacillus. You simply take it in capsules with each meal and drink enough water and it works quite well for me. Nothing artificial and will not cause cramps like a laxative type product.
Just my simple contribution to the "movement"
missy
I was very embararased to discuss this problem but to help someone here it goes.
I recently went to gastro doc and spilled my guts LOL on the difficulty of of emptying
bowels. He stated he has about 30 ms patients that complain about this problem
and that it is a nerological problem for sure. ( A signal problem from brain or spinal cord} is not comming thru.
I have lesions in both. Fiber+water+miralax were recommended. and an enema if needed. Hope this helps on #2 ing Linda
You wrote this so beautifully. Your message came across well but was underlined with such well timed humor. You took a touchy subject and made it so others could feel more relaxed with it. Well done.
Although I don't have constipation usually, I do have the problem of not knowing I have to go till it's right at the door. This can be a major problem if I'm on the road driving and short of using the back forty (fields) for a throne, it can be quite unsettling. I have found that coffee for whatever reason helps things along, so if going anywhere, I'm up earlier to have that java and move things along.
Hugs
Moki
I too, have the problem of "starting" and then have no "urge" to continue going. This may sound strange, but it's only on one side of my "exit arena." (Nicest way I know to put it.) As you know, if all muscles are not working in tandem, that stool isn't going anywhere. For now, I have literally lost the sensation on one side, to "go" effectively.
What do you do? Call a wrecker service for a tow?
And you are right Quix, when you talk about hygiene. Before my back gets stretched out in the morning, there is extreme pain to twist sideways to cleanse myself. So, before I go in to sit on the porcelain throne, I actually am starting to do stretches from the waist, to get my back limbered up. It's alot of work, I swear to take care of this one bodily function. If I have the "urge" to go when I am away from the house, I panic.
Quix, try some stretching of your back at the waist before you go to "try to do the deed." It helps to take care of the sanitation part, not perfect; but much easier. A bidet does sound like a future purchase for this household.
This really is a huge problem among alot of Forum members. Huge in more ways than one.
Heather
I think this is a good place to those that have been too embarassed to speak up and tell us their problems.
I for one have had constipation all my - and my family's - life. We all have a slow transit time. I usually have mine under control with fiber, stool softener (docusate - Colace) and senna.
I have a new problem that is clearly neurological. This is going to sound indelicate, but I don't know of any way of talking about it without it. I hope this doesn't embarass anyone. But, maybe some of you will recognize it and realize you're not alone.
I have to stay current EVERY DAY on my cocktail of fiber and such, but sometimes the whole colon just slows down for no apparent reason, but it is usually associated with other symptoms of a relapse. Now the problem is the when the urge comes it is weaker and doesn't last long enough. The movement begins and suddenly the urge is GONE - whiff! and there is no way to push it out. This is so frustrating, especially if I am away from home. I have heard several other of our group complain about the inability to push the stool out. Some have emailed me too embarrassed to mention any of this on the forum.
Believe me guys, problems with constipation or incontinence of stools is very common in MS. We have to know about it and talk about it.
The other problem is hygiene. The spasticity sometimes makes it hard to cleanse and I have sewn some long washcloths to use. This is worse in the morning before my back has stretched out. I have been investigating the toilet lids that act like bidets and cleanse with warm water and blow dry. (Cost $700 to $1200)
Quix
"Growing movement," indeed.
I could surely use a decongestant!
Since we are talking fiber and successfull "going." Mmmmm, yummy grilled or fried (in butter of course) asparagus with roasted red pepper on a nice hard roll with with a slab of mozz. or provalone cheese sang'wich!
Don't forget to smother it in balsalmic vinegar! Or, oil and vinegar!!!!!!!!
I'm hungry - thanks Heath!
-shell
Thanks Heather for your enlightened contribution to this growing movement. We all can use the reminders again and again of how to keep our systems flushed.
my best,
Lulu