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Re: Embarrassing Question

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Filipi said the following on 10/30/2006 11:58 PM:

> To those people who have lost most of their bowel function, could you tell

changes were occurring? In other words, did you have a change in bowel

patterns? Any incontinence issues? Thanks for your honesty and willingness to

share.

>

Hi ,

I do not know what the relationship is between tcs and bowel function

but it seems to be the extreme of both issues. I guess it depends on the

particular nerves involved. Our problems all deal with either no or

limited muscular function (flaccidity) or too much function (spastic).

From what I have been reading here for the past 10 years is that most

people here are constipated. That would most likely be due to lack of

muscle function in the bowel - so it does not 'move on'. Not in my case,

I seem to have a spastic colon, cant keep it in there long enough to

absorb the moisture. Plus the muscle that holds it in doesnt seem to

work very well. The fix my doctor found is Cholestyramine powder. It is

a substance made to absorb fat before it enters the blood stream as

cholesterol. It makes me constipated but that is quite all right

compared to the other choice. This was after the surgery. Four weeks ago

when I saw my doc, she told me to go buy some Emergen-C which is a bunch

of minerals and electrolytes plus a 1000 mg of vitamin C. The directions

are to take it every 8 hours. That was fine for 2 days but after that I

found that 3000 mg vitamin C per day for me is like taking a laxative...

I googled for the Topamax side effects; constipation falls under common,

diarrhea falls under less common. You said this started when you started

Topamax, maybe you could ask your doctor for something else and stop the

Topamax to see if there is change back to your normal. Think about any

changes in your diet. I would not think that this symptom, by itself,

would be concern for retethering.

Rick

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,

Both Neurontin and Lyrica cause bowel problems with

me. I figured out that as long as my stool isn't

loose, I can control it. If it gets too loose, I don't

feel when I have to go and then whoops. Topamax

didn't do that to me, but it did cause me all sorts of

other wonderful side effects and weird feelings.

Ask your doctor. See if there's something else you

can take. I lived with stomach issues for 2.5 years on

neurontin because the pain relief was so wonderful,

but it's hard to live a life outside the house with

encopresis. It is really embarrassing and

uncomfortable.

--- Filipi wrote:

> Hi,

> I have a embarrassing question that I have been

> putting off asking the group for a long time. People

> have mentioned that they have had problems with

> bowel and bladder incontinence. I have self

> catheterized all of my life (I am 33 now). My bowel

> program has been fairly predictable.... that is

> constipated. Only occasionally would I have an

> accident (especially if I had just exercised). Now

> I am anything but constipated. This started about a

> month and a half ago when I started Topamax .... so

> it might be a side effect of that. But I am worried

> that it might be a sign of retether. I have been

> incontinent more at night (with urine).

>

> So here is my question :To those people who have

> lost most of their bowel function, could you tell

> changes were occurring? In other words, did you

> have a change in bowel patterns? Any incontinence

> issues? Thanks for your honesty and willingness to

> share.

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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For myself, increase in bowel incontinence was one of the signs that

I had retethered, along with increased pain and bladder problems.

You might want to check with your neurosurgeon. Since I am not

taking any meds for TCS, since none have helped, mine is not a side

effect. Patsy

>

> Hi,

> I have a embarrassing question that I have been putting off asking

the group for a long time. People have mentioned that they have had

problems with bowel and bladder incontinence. I have self

catheterized all of my life (I am 33 now). My bowel program has been

fairly predictable.... that is constipated. Only occasionally would

I have an accident (especially if I had just exercised). Now I am

anything but constipated. This started about a month and a half ago

when I started Topamax .... so it might be a side effect of that.

But I am worried that it might be a sign of retether. I have been

incontinent more at night (with urine).

>

> So here is my question :To those people who have lost most of

their bowel function, could you tell changes were occurring? In

other words, did you have a change in bowel patterns? Any

incontinence issues? Thanks for your honesty and willingness to

share.

>

>

>

>

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i HAVE HAD A COLOSTOMY,UROSTOMY,AND CONTINARY DIVERSION.I HAVE URINE

ACCIDENTS FARELY RARELY.tHE WEIRD THING THAT HAPPENS TO ME IS I WILL BE ON THE

TOILET EMPTYING MY COLOSTOMY BAG,AND I HAVE A REALY VERY STRONG URGE TO PUSH OUT

MY BOWELS THROUGH MY RECTUM ,WHICH IS IMPOSSIBLE, BECAUSEI HAVE A HARTMAN

CLOSURE OF MY RECTUM,IN OTHER WORDS THEY STAPLED MY RECTUM SHUT. hAS ANYONE ELSE

HAD THE SAME EXPERIENCE.

MOE

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I have a sigmoid colostomy(14 yrs ago) that I irrigate once a day, improved my

life tremendously as now I wear a little padded adhesive patch over the stoma so

I can wear fitted clothes & exercise which by the way keeps my pain at bay.

There was no reason to do anything to the rectum, have occasional mucous

discharge but very light. Not a lot of sensation anywhere down there. I am

retethered all the way under the end of the tail-sacrum but no Chiari.

Currently seeing a pelvic floor physical therapist-she said she has 80 yr old

patients with much more internal tone. Bio-feed back is showing next to nothing

in response, next she is going to try stimulators vaginally. Have any of you

gone thru all this regimen? Trying everything to avoid a double ostomy- Moe how

does your urostomy work & were your surgeries done simultaneously?. Also, I

was not successful at cathing and would like some pointers before I try again,

like size of the cath & timing & technique?. Have a prolapsed bladder &

urethra. Random small bits of info we share can make a big difference-

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Sumchyk was found muttering these words:

Hi Moe -- while I haven't had any of the 'ostmy's yet I have just started

the round of doctor's visits to uncover the horrible sensation you

describe. The first doctor told me I had a slight prolapse, and the

sensation was out of line with the amount of prolapse he found. Instead --

per usual, I was directed to a psychologist/psychiatrist since it must be

an imaginary sexual problem that sprang up out of nowhere (suddenly).

I didn't find that helpful ;-)

Doctor #2 felt it was a nerve problem and was actually able to duplicate it

by pressing on an internal area. I found this most helpful and was able to

get an internal solution that was 90% cure (unfortunately it is a female

only possibility).

Another doctor helped by adding lidocaine -- not internally but in the

peri-anal area. This is available in patches and in cream form. Again, DO

NOT use this internally, but experiment near -- I was able to put it above

and get some relief.

In the end I was able to get some help, and there was some discussion of

surgery -- so thank you for letting all of us know surgery does NOT make

this problem go away!!!

> i HAVE HAD A COLOSTOMY,UROSTOMY,AND CONTINARY DIVERSION.I HAVE URINE

> ACCIDENTS FARELY RARELY.tHE WEIRD THING THAT HAPPENS TO ME IS I WILL BE

ON THE

> TOILET EMPTYING MY COLOSTOMY BAG,AND I HAVE A REALY VERY STRONG URGE TO

PUSH OUT

> MY BOWELS THROUGH MY RECTUM ,WHICH IS IMPOSSIBLE, BECAUSEI HAVE A HARTMAN

> CLOSURE OF MY RECTUM,IN OTHER WORDS THEY STAPLED MY RECTUM SHUT. hAS

ANYONE ELSE

> HAD THE SAME EXPERIENCE.

>

> MOE

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please dont do the vaginal stimulators !!! It was the worse torture,I ever

felt.I know you don't know me from a hole in the wall but really research this

and ask alot of questions ,before you do anything. I was in so much pain my dad

heard me in the waiting room and busted in and made the butcher stop. Dr.

Sussett.

Moe

p.s. never be embarressed to ask questions,we are all pretty much in the same

boat .

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