What no one wants to talk about

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What no one wants to talk about

Postby missvicki » Wed Feb 27, 2008 11:23 pm

....including me. I'm having issues with bowel incontinence. Pretty embarrasing as you can imagine. Has anyone else ever experienced this and found a way to control it? Do I need to go see a specialist? Thanks. :oops:
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Postby robbie » Thu Feb 28, 2008 9:14 am

Hi Missvicki, I have had this for years and years sometimes its constipation and then it's the trots. It has been embarrassing on some occasions but more of just a pain in the ass excuses the pun. Not so bad when I am at home but out of the house it really weighs heavy on the mind will I or won't I have to go and will it give me enough time to get to the toilet. Now that my mobility is so bad it can be quite a panic situation. I only wear track pants so I can get them down quickly which still isn't good enough sometimes I'm sure there are drugs for it as with everything but I just choose to eat and drink very little this helps. As I have said ms is a very humiliating disease and this is just another way it slaps us in the face. I just want you to know that your not alone with any of this ms shit, I am no help on this web site other than to share experiences.
Had ms for over 19 years now.
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Postby gwa » Thu Feb 28, 2008 10:25 am

missvicki,

Try to get an appt with a gastro specialist. He should be able to help you.

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Postby robbie » Thu Feb 28, 2008 10:29 am

Have you ever had this problem GWA and did your gastro specialist fix it?
Had ms for over 19 years now.
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Postby gwa » Thu Feb 28, 2008 1:29 pm

Haven't had this problem, robbie, but did have the urinary problem until I went to a urologist.

I always hunt out specialists for specific problems because I don't believe the average GP is knowledgeable enough to handle MS problems such as these.

It is a starting point for her. If they can't fix her, then she will at least have tried to do something. It is also very possible that her symptoms have nothing to do with MS and she needs to be checked for other problems.

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Last edited by gwa on Thu Feb 28, 2008 4:19 pm, edited 1 time in total.
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Postby jimmylegs » Thu Feb 28, 2008 3:04 pm

mv, how long have you been having this problem? is it sudden urgency gotta go right now, or worse than that?
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Postby Brainteaser » Fri Feb 29, 2008 8:33 pm

Occasionally I've had diarreah and concern that I might not get to the loo in time, given my slow walking speed. I got some big-boy nappies (daipers?) from the pharmacy which have helped at these times. It's still advisable not to dilly-dally when you need to go, but at least the nappies give you confidence and reduce the stress level.
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Postby TwistedHelix » Sat Mar 01, 2008 9:29 am

Robbie, "… sometimes it's constipation and then it's the trots…" sounds a lot like Irritable Bowel Syndrome to me. Those were my symptoms until I started taking Mebeverine. I had to experiment to find the right dose because too much or too little and the symptoms come back but, as gwa says: it might not necessarily be anything to do with MS,
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Postby gwa » Sat Mar 01, 2008 10:37 am

There is a lot of information that links IBS and Ulcerative Colitis with people that have MS. If a person has MS and then starts having bowel problems, he should get checked out for a bowel disease.

At least there are treatments for those two conditions. My son has UC and I worry about him coming down with MS all the time.

Another thing about bowel problems, sorbitol (sugar alcohol) is especially problematic for those suffering from bowel disease. It is in a lot of foods, especially those that have artificial sweeteners instead of sugar.

The sorbitol can bring on attacks and should be avoided. I found an article several months ago about sorbitol and UC and sent it to my son. He confirmed that before his latest attack he had been eating a sugar free ice cream and then ended up with the bloody diarrhea again. Now he knows to avoid this ingredient.

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Postby daisy » Mon Mar 03, 2008 2:00 pm

Miss Vicki -

This is a problem my husband experienced. Last year he began losing walking ability along with bladder and bowel control. Sometimes he would just "go" and not even know he went. Adult Depends - yes - but they won't really contain very well a full "accident" - bowel or bladder - even with extra padding.

We quit going out in public very much for these problems as clean up was a nightmare in public. On the rare occassion we did go out - I only went places where I knew exactly where the handicap stall was located. Often out in public - I would take him to the restroom even when he said he didn't need to and often he would definitely "go". Also assembled a travel kit for the car - wipes, large towel for modesty, extra Depends, extra clothes, jug of water, paper towels, trash bags, gloves, lysol, etc...

At home, I put him (had to be lifted on and off) on the toliet multiple times per day to sit and especially within 30 minutes of eating. This helped a good deal.

My husband's fairly famous MS neuro would only recommend seeing a Gastro and a Uro for help with these problems. My husband had been on quiet a bit of steriods (oral and IV) and a total of six infusions of Novantrone in 2007 (double dose) without making a dent in his aggressive MS disease.

Now at the risk of getting harangued abit on this forum - my husband started a very aggressive protocol of multiple antibiotics in high doses back in the fall of 2007 to treat his very aggressive form of MS as an infection in his brain rather than just autoimmune disease bad luck. We were pretty much out of options so this one was easy to pick.

At first, as the infectious treating doctor warned, my husband got worse - significantly worse - then suddenly amazing improvements occurred. One of the first improvements he made was regaining control of both bowel and bladder. He has complete sensation again as to when he needs to eliminate in either way and can actually wait for a decent amount of time until a restroom is available. I won't post the rest of his improvements here as you specifically asked about this issue.

Part of his story is posted here in the regimes section and the full story complete with pictures is posted on another website. I am committed to updating his progress good or bad with this experimental treatment.

Who knows if it might work for you too - just throwing it out there. Having lived through this issue for quiet a while with my husband, I wish you all the best and applaud your openess in looking for solutions - as many doctors aren't even comfortable discussing this particularly gruesome reality of MS.
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yup

Postby notasperfectasyou » Mon Mar 03, 2008 3:15 pm

ditto with Daisy. Kim had lost control over her bowels and bladder in the 2007. She is also on a similar treatment to the one that Daisy's husband is on. Kim is in this now 2 months and she has made significant strides towards recovering control over her bowels (entirely) and bladder (mostly). This did not happen right away and she needed to follow the protocol that was prescribed to the letter. Ken
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Postby missvicki » Mon Mar 03, 2008 11:41 pm

To all that have shared their similar experiences, I appreciate your candor! It is not easy to talk about.

My problem is that I have either constipation or I have no control over my bowels and often have an accident.

I have noticed that exercise does help and I'm eating yogurt everyday and drinking lots of water and that seems to help.

I will make an appt with a gastro specialist and also look into the antiobiotic regime that Daisy speaks about.

Again, thanks to all for your feedback!
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Postby Jim_P » Tue Mar 04, 2008 3:50 am

I cannot shit and also shit myself. Best of both worlds
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Postby daisy » Wed Mar 05, 2008 8:29 am

Miss Vicki -

To keep the constipation problem at bay for my husband, he drinks water religiously throughout the day, exercises as much as possible, ingests 200 billion of mixed probiotics per day (you need capsules not yogurt to get this) and we watch his food fiber intake.

Also - as a fiber additive - apple pectin capsules are generally well tolerated by even the most sensitive of folks. I have found the constipation aspect of his MS easier to treat than the incontinence. All of the above have worked like a charm.
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