MS -Retaining Stool/Urine

[dptctms]

I have MS. I have been retaining my urine & stool.
I have very bad back pain right at the bottom of my spine. I believe at this point it is due to not getting out all of my stool.  I take Mirlax to help with constipation. About once a week I have a decent bowel movement, but can't quite get it all out. This causes me to leek stool through out the next couple of days when I bend over or sometimes just when I walk up stairs.  
When I reported this to my Neurologist  he sent me to a Urologist, who now has me taking 0.8 mg of Flomax which has helped me to empty out my bladder.
I plan on seeing a GI doctor next.  
Any input or suggestions to help would be really appreciated.

[Lulu54]

We can do whatever is necessary to keep our bodies as healthy as possible.  We are allowed to whine a bit, but when push comes to shove we can just buck up and do it!    When in doubt, just imagine the consequences if you don't!

my best, L

[twopack]

"I suppose if I can get used to giving my self Copaxone shots everyday, I can get used to self-catherization. Right? "

Absolutely!!  Lulu would be the experienced expert here but I'd say that would be a snap.  Injecting yourself brings nothing but potential long-term benefit and immediate discomfort.  Cathing yourself offers sweet relief.  Ahhhhhhhhhhhhh

I really think a good physiatrist (MD or DO) or spinal cord treatment center could help you.  Maybe a MS center could offer the same.  Thanks for being so open and let us know how you do please.

Mary

[dptctms]

Thanks, to all of you for your input, encouragement and suggestions. It is good to know that a routine might be accomplished.
I have been trying to do this on my own, but I just can't seem to get it right.

Taking the Miralax at different times and frequency does not seem to solve my issue. twopack is right, my sensation and muscle strength have been slowly getting worse over the last 15 years. The leaking just began 3-4 months ago.

It is time for me to come to terms that this problem is not going to go away.
But hopefully, something can help me from dealing with this issue at work or out in public.

My grandmother died at the age of 53 of kidney failure and colon cancer.
You guys are right. I need to take this seriously, I'm 51.


I received an Urodynamic pressure flow bladder test before my MS diagnose which came in Dec. of 2008. I now have frequent ultra sounds on my bladder & kidneys before and after going to the bathroom. They get some kind of reading from the ultra sound on how much is being retained.  The doctor told me that if the larger dose of Flomax doesn't keep helping me then I get the honor of performing self-catherization. It looks like I am not alone. I suppose if I can get used to giving my self Copaxone shots everyday, I can get used to self-catherization. Right?

[Quixotic1]

Hi, and another welcome to the forum!

I would like to focus on the other problem.  Have you been throughly checked for urine retention?  This is where they have you empty your bladder and then they cath you to see how much is left.  Urine retention can be very serious.

Quix

[Lulu54]

this can be such a vicious cycle - the slggish bowels affect the bladder.  If you cut back on fluid because of your bladder problem then you can be compounding the bowel problem.  

Have you tried increasing the miralax dose?  Its costly so ask your doctor to give you a rx for polyethylene glycol 3350 - this is the generic form of miralax, without the advertising.  It is incredibly cheap by generic rx and can be taken more than once a day if needed.

What type of testing did they do for the urine retention?   I have the same problem and use intermittent self-catherization regularly through the day to help.  Again, the retention turns into a weird problem because the sense of urgency usually accompanies retention , over and over.  

I hope the GI doctor will be of help with the bowel problems - don't give up lookin for the right combination, ok?

be well, Lulu

[twopack]

It sounds like this is more than a straight up constipation problem.  Do you have the sensation and muscle strength to control you bowel evacuations?  If you don't, diet changes and laxatives will do nothing more than cause you to pass loose stool at random times.  It's good to evacuate the bowel.  It's better if you can control when that will happen..

The GI doctor might have some suggestions but you may also want to see a physiatrist.  That's a doctor who specializes in rehabilitation medicine.  Some of them sub-specialize in spinal cord injury and would be able to help you establish a bowel routine.

A bowel routine uses diet, medications, and regular timed stimulation of the rectum to produce evacuation at specific times.  How often that happens is based on your own history and needs.  It takes some time to train the bowel in this way but once you do you can significantly decrease the constant or irregular leakage of liquid stool you are experiencing now.

This routine is a necessity of life for people with spinal cord injury but few people without one even know it exists.  I'm going to try to look up a place online that describes this in more detail but you need to have a medical professional help you develop a personal program that would fit your needs and abilities.

Welcome to our world at the MedHelp MS forum.
Mary

[dptctms]

Thanks so much for your input. I will try incorrporating more of the insoluble foods you have listed. It should be easy since I like all of them!
Thanks again!

[slightlybroken]

I know this must be uncomfortable for you, and I'm sure your GI doctor will probably give you something stronger than Mirlax. I've heard of people on the forum having better luck with Colace. I hope you have an appointment with your GI doctor soon, so you can have relief.

If you haven't done so, increase your fluid intake (water). Try increasing your insoluble fiber intake. There is a difference in fiber..Soluble slows down the digestive track, while insoluble helps it pass more quickly, relieving constipation. This might help a little, or at least until you can see your GI doctor.

Here is some examples of insoluble fiber:

Whole wheat flour, whole wheat bread, whole wheat cereal
Wheat bran
Whole grains, whole grain breads, whole grain cereals
Granola
Meusli
Seeds
Nuts
Popcorn
Beans and lentils
Berries (blueberries, strawberries, blackberries, cranberries, etc.)
Grapes and raisins
Cherries
Pineapple
Peaches, nectarines, apricots, and pears
Apples
Rhubarb
Melons
Oranges, grapefruits, lemons, limes
Dates and prunes
Greens (spinach, lettuce, kale, mesclun, collards, arugala, watercress, etc.)
Whole peas, snow peas, snap peas, pea pods
Green beans
Kernel corn
Bell peppers
Eggplant
Celery
Onions, shallots, leeks, scallions, garlic
Cabbage, bok choy, Brussels sprouts
Broccoli
Cauliflower
Tomatoes
Cucumbers
Sprouts (alfalfa, sunflower, radish, etc.)
Fresh herbs

I hope this will help a little:)

Take Care

[dptctms]

Thank you I apprecieate your sympathetic ear.  
It is good to know that I am not alone.
So far I can handle all the other symptoms of MS.
But this problem really has put a damper on my daily life.
Have you tried taking Mirlax?
I feel that if I didn't take it, I might never be able to go

[steph74]

I wish I had some advice, but I wanted to lend a sympathetic ear and let you know that we're here for support, even if I don't have an answer (others might).

That sounds really rough.  I have problems with only being able to go about every 3 days, and that's no fun.  I can't imagine how much discomfort you're in.  I also have pain that may be similar, though for me, it's after I have a movement.  I have what feel like spasms for several minutes afterward.  Sometimes when I really need to go and can't, I feel a similar pain.

Good luck with the GI doctor.