Re: need a little help and guidance

[Guest guest]

Hi Kate,

I'm so sorry to hear you are having really nasty bowel

problems. I think out of all of the things I've had

to handle, the bowel issues have been the absolute

worse. Miralax is one wicked laxative. I'm guessing

you have to stay in the house when you use that stuff.

I know if I take anything that makes my bowels loose,

I have to stay home.

There are things you can have done that will take care

of the whole bowel issue, surgically. But if it's

affecting your life so much that you can't have one at

all, you should definitely talk to your doctor about

options. I don't know what kind of doctor handles

bowel issues. Maybe someone else can help you with

that.

Not sleeping - there's a problem I can relate to.

What is causing your sleeplessness? Is it the pain?

It's okay to sound depressed here. Most of us have

been in that place. It's tough to have something that

affects so much of your life, and it's even tougher to

have the worst parts of it. I hope you can get some

encouragement here, and some good advice about who to

go see to get the problems under control so you can

get your life back.

Hugs,

--- ktdid333 wrote:

> i'm kate...this is my first post...i'm 24, had my

> first detethering with a large lipoma at 15

> and second at 17 both partial releases....it's been

> a downward spiral from there...i've never

> had a job and i was home schooled in and out high

> school....things have slowly gotten

> much much worse...self-cath and the bowels are an

> absolute nightmare...i don't sleep

> anymore...i've tried every med to sleep...the pain

> is unbelievable...of course i'm writing all

> this in a frenzied sleep deprived mess...but i can't

> take pain meds due to the bowels, in

> fact any meds effect the bowels...the depression due

> to this disease is so bad...i'm on

> myralax.....i tried it all...changed my diet

> completely....i haven't had a social life in three

> yrs.. not many friends, i don't leave the house

> really.....i know i'm sounding so depressing

> right now....i just want to know is there any

> surgery that someone on here that has helped

> the bowel.....i'm just at a loss.....any help would

> be so appreciated~thank you

>

>

>

________________________________________________________________________________\

____

Sponsored Link

Rates near 39yr lows. $510,000 Loan for $1698/mo.

Calcuate new payment. www.LowerMyBills.com/lre

[Guest guest]

Thanks for getting back to me, actually i'm so dependant on the

miralax that it has almost lost it's effect, if i double the dose than the

already big dose than i just vomit...I do see a GI doc...but he never really

gives me answers that are promising, he says as long as something is coming

out thing look fine(the sitzs marker study) but 5 days until I have a bowel

movement is not something i can live comfortably with...he hasn't been much

help and enemas i absolutely hate doing...leaves way too much gas and are

unpleasant....well just you writing back has made be feel a little better

today...and the sleeping is definitely contributed to the pain and

anxiety....Let me know what's going on with you as well, i have never met

any one who shares TCS...when did you have surgery, how old were you when

you felt an onset of symptoms, if you don't mind sharing...thanks again for

your response...it's comforting~kate

>

>Reply-To: tetheredspinalcord

>To: tetheredspinalcord

>Subject: Re: need a little help and guidance

>Date: Tue, 21 Nov 2006 04:28:40 -0800 (PST)

>

>Hi Kate,

>

>I'm so sorry to hear you are having really nasty bowel

>problems. I think out of all of the things I've had

>to handle, the bowel issues have been the absolute

>worse. Miralax is one wicked laxative. I'm guessing

>you have to stay in the house when you use that stuff.

> I know if I take anything that makes my bowels loose,

>I have to stay home.

>

>There are things you can have done that will take care

>of the whole bowel issue, surgically. But if it's

>affecting your life so much that you can't have one at

>all, you should definitely talk to your doctor about

>options. I don't know what kind of doctor handles

>bowel issues. Maybe someone else can help you with

>that.

>

>Not sleeping - there's a problem I can relate to.

>What is causing your sleeplessness? Is it the pain?

>

>It's okay to sound depressed here. Most of us have

>been in that place. It's tough to have something that

>affects so much of your life, and it's even tougher to

>have the worst parts of it. I hope you can get some

>encouragement here, and some good advice about who to

>go see to get the problems under control so you can

>get your life back.

>

>Hugs,

>

>

>

>--- ktdid333 wrote:

>

> > i'm kate...this is my first post...i'm 24, had my

> > first detethering with a large lipoma at 15

> > and second at 17 both partial releases....it's been

> > a downward spiral from there...i've never

> > had a job and i was home schooled in and out high

> > school....things have slowly gotten

> > much much worse...self-cath and the bowels are an

> > absolute nightmare...i don't sleep

> > anymore...i've tried every med to sleep...the pain

> > is unbelievable...of course i'm writing all

> > this in a frenzied sleep deprived mess...but i can't

> > take pain meds due to the bowels, in

> > fact any meds effect the bowels...the depression due

> > to this disease is so bad...i'm on

> > myralax.....i tried it all...changed my diet

> > completely....i haven't had a social life in three

> > yrs.. not many friends, i don't leave the house

> > really.....i know i'm sounding so depressing

> > right now....i just want to know is there any

> > surgery that someone on here that has helped

> > the bowel.....i'm just at a loss.....any help would

> > be so appreciated~thank you

> >

> >

> >

>

>

>

>

>_______________________________________________________________________________\

_____

>Sponsored Link

>

>Rates near 39yr lows. $510,000 Loan for $1698/mo.

>Calcuate new payment. www.LowerMyBills.com/lre

>

>

>Not Medical Advice. We Are Not Doctors.

>Need help with the list? Email

>kathy@...,michelle@..., rick@...

>

[Guest guest]

That's one of the problems with laxatives. You get so

used to them, then you have to up the dose. And you

can't keep doing that because there is a point where

everything becomes toxic.

I had two surgeries, the first at 20 and the second at

30. My bladder doesn't work and hasn't since I was 26

or something like that. I have a lot of pain that

comes and goes. Some days, I am really good. Other

days, I feel like I spend all day hurting like crazy.

Some days, I just want to cry. I have narcolepsy,

chronic insomnia, and fibromyalgia. The insomnia has

been something almost all my life. The

narcolepsy/fibro thing started in 1999, went away for

awhile in 2002, and came screaming back in 2004. I

never know what is affecting which part when. It's a

big blur for me.

Lack of sleep definitely makes the pain worse, then

the pain makes it hard to sleep. And that makes my

mood worse, and that makes it hard to function. It is

just one big merry-go-round, and I do understand how

frustrating it is. Most days, I enjoy the ride, but

there are days when I definitely don't.

It sounds to me like you might want to see a new GI

doctor, one that is not just interested in what is

coming out, but rather how well and how consistently,

and is it a way in which you are not in more pain.

And why you can't have a normal life. Your doctor

should be interested in much more than " are things

moving " . He should be looking at you as a whole

person, not just as a digestive system that happens to

have a body surrounding it.

I am so sorry this happened to you at a young age. I

feel so lucky to have gotten as far as I did before I

started having problems.

--- kate marek wrote:

> Thanks for getting back to me, actually i'm

> so dependant on the

> miralax that it has almost lost it's effect, if i

> double the dose than the

> already big dose than i just vomit...I do see a GI

> doc...but he never really

> gives me answers that are promising, he says as long

> as something is coming

> out thing look fine(the sitzs marker study) but 5

> days until I have a bowel

> movement is not something i can live comfortably

> with...he hasn't been much

> help and enemas i absolutely hate doing...leaves way

> too much gas and are

> unpleasant....well just you writing back has made be

> feel a little better

> today...and the sleeping is definitely contributed

> to the pain and

> anxiety....Let me know what's going on with you as

> well, i have never met

> any one who shares TCS...when did you have surgery,

> how old were you when

> you felt an onset of symptoms, if you don't mind

> sharing...thanks again for

> your response...it's comforting~kate

>

>

> >

> >Reply-To: tetheredspinalcord

> >To: tetheredspinalcord

> >Subject: Re: need a little help and guidance

> >Date: Tue, 21 Nov 2006 04:28:40 -0800 (PST)

> >

> >Hi Kate,

> >

> >I'm so sorry to hear you are having really nasty

> bowel

> >problems. I think out of all of the things I've

> had

> >to handle, the bowel issues have been the absolute

> >worse. Miralax is one wicked laxative. I'm

> guessing

> >you have to stay in the house when you use that

> stuff.

> > I know if I take anything that makes my bowels

> loose,

> >I have to stay home.

> >

> >There are things you can have done that will take

> care

> >of the whole bowel issue, surgically. But if it's

> >affecting your life so much that you can't have one

> at

> >all, you should definitely talk to your doctor

> about

> >options. I don't know what kind of doctor handles

> >bowel issues. Maybe someone else can help you with

> >that.

> >

> >Not sleeping - there's a problem I can relate to.

> >What is causing your sleeplessness? Is it the

> pain?

> >

> >It's okay to sound depressed here. Most of us have

> >been in that place. It's tough to have something

> that

> >affects so much of your life, and it's even tougher

> to

> >have the worst parts of it. I hope you can get

> some

> >encouragement here, and some good advice about who

> to

> >go see to get the problems under control so you can

> >get your life back.

> >

> >Hugs,

> >

> >

> >

> >--- ktdid333 wrote:

> >

> > > i'm kate...this is my first post...i'm 24, had

> my

> > > first detethering with a large lipoma at 15

> > > and second at 17 both partial releases....it's

> been

> > > a downward spiral from there...i've never

> > > had a job and i was home schooled in and out

> high

> > > school....things have slowly gotten

> > > much much worse...self-cath and the bowels are

> an

> > > absolute nightmare...i don't sleep

> > > anymore...i've tried every med to sleep...the

> pain

> > > is unbelievable...of course i'm writing all

> > > this in a frenzied sleep deprived mess...but i

> can't

> > > take pain meds due to the bowels, in

> > > fact any meds effect the bowels...the depression

> due

> > > to this disease is so bad...i'm on

> > > myralax.....i tried it all...changed my diet

> > > completely....i haven't had a social life in

> three

> > > yrs.. not many friends, i don't leave the house

> > > really.....i know i'm sounding so depressing

> > > right now....i just want to know is there any

> > > surgery that someone on here that has helped

> > > the bowel.....i'm just at a loss.....any help

> would

> > > be so appreciated~thank you

> > >

> > >

> > >

> >

> >

> >

> >

>

>_______________________________________________________________________________\

_____

> >Sponsored Link

> >

> >Rates near 39yr lows. $510,000 Loan for $1698/mo.

> >Calcuate new payment. www.LowerMyBills.com/lre

> >

> >

> >Not Medical Advice. We Are Not Doctors.

> >Need help with the list? Email

> >kathy@...,michelle@...,

> rick@...

> >

[Guest guest]

Hi Kate,

Welcome to the list. There's much experience here and hopefully you

can find some ideas.

I grew up with uncorrected lipomyelomeningocele with a huge lipoma.

I've always been on the constipated side of TC and never had a bm any

sooner than every 3 days. I had my cord released when I was 51 years

old (gosh, almost 10 years ago!) and even tho I'm symptomatic again,

I'm not a candidate for another one.

Now, I manage my bowels by a daily dose of miralax (just to keep

things soft) and enemas every 3rd day using a stoma cone (to actually

have a bm) (the cone because my sphincter doesn't work to hold the

water in). So far, that's worked for me, keeps me continent of bowel.

I used to have lots of gas with them, until I figured out a way to

make sure there was no air in the tube. There are various techniques

that might help.

I'd suggest that you try to find a gastroenterologist (G.I. doctor)

who either sees adult Spina Bifida or spinal cord injured patients.

They would probably be best able to discuss other options for

neurogenic bowels (which is what we have).

Lots of people with SB get an operation called a cecostomy or malone

(I think it's the malone, could be wrong about that name) that gives

you a stoma to give yourself an enema from the top down.

Another option could be to get a colostomy - a friend of mine just had

one. Her bowels were a real mess and she has been delighted with it.

Says managing a bag is much better that what she had before.

And yes, not being able to sleep will definately make pain levels worse!

V

[Guest guest]

HI MY NAME IS MOE. I AM 42 I WENT THROUGH THE SAME THING FOR ALL MY LIFE..I

AM SO SORRY YOU HAVE TO DEAL WITH THIS!! IT TOOK ME TEN YEARS FOR A DOCTOR

COLLER AT THE LAHEY CLINIC IN BURLINGTON MASS..I FOUND HIM AND HE HELPED ME

RIGHT AWAY .NO ONE ELSE WOULD HELP ONE,BECAUSE ,I WORKED WHILE THIS WAS GOING

ON.I WORE DEPENDS DOUBLE,ALL THE TIME.I WORKED AT FIVE A.M. IN THE MORNING SO I

WAS ALONE IF I HAD A PROBLEM.IWAS TOLD I DID NOT HAVE A PROBLEM BECAUSE WHEN

THEY DID THE MARKER STUDY THEY ALL PASSED IN 2 DAYS.I DON'T KNOW ABOUT

YOU,BUT WHEN I AM REALLY SCARED OR WORRIED I GET THE RUNS. SO 2 DAYS LATER I GO

BACK TO THE DOC ,NO MARKERS,LITTLE METAL BEADS,IF YOU NEVER HAD THE STUDY, SO

..THEY SAID NO PROBLEM,ALL THE MARKERS ARE GONE!! THEN,I HAD TO DO THE MOST

EMBARRASSING TEST .THEY PUT PUTTY UP MY BUT ,AND SAID ,OKAY NOW 'HONEY'' PUSH

IT

BACK OUT. I WAS TRYING SO HARD ,I GAVE MYSELF A HERNIA IN THE GROIN

AREA..WHEN I COULD NOT PUSH THE PUTTY OUT BECAUSE OF NO MUSCLE TONE,NO

PARASTOLSIS TO

PUSH THE STUFF OUT. THE DOCTOR ,WHO READ UNABLE TO VOID FOR UNKNOWN

REASONS,KNOWING ,I HAD SPINA BIFIDA.

WHEN I SAW DR.COLLER HE LAUGHED HIS HEAD OFF !!! HE ACTUALLY CALLED THE

DOCTOR THAT READ THE TEST WHILE I WAS THERE. IT WAS GREAT !! HE SAID DID YOU

TAKE INTO ACCOUNT THAT THE PATIENT HAS SPINA BIFIDA,THE TEST DOCTOR ACTUALLY S

AID !! AND I QUOTE '' I DID NOT HAVE TIME TO READ THE CHART. BUT THE BEST

THING WAS, WHEN I LEFT THE TEST ROOM AFTER ABOUT 20 MINUTES OF PUSHING,IT ALL

CAME OUT ALL OF THE SUDDEN.I LEFT A TRAIL FROM THE TEST ROOM ,TO THE CHANGING

ROOM !!DR.COLLOR,SAID HE DESERVED THAT ONE!!!!

ANYWAY,I JUST WANTED YOU TO KNOW YOU ARE NOT ALONE ,I USED TO HAVE AN

ACCIDENT EVERY TIME I LEFT THE HOUSE !! BUT NOW I HAVE A COLOSTOMY,AND A

UROSTOMY.LIFE IS SO MUCH BETTER.NOW IF ONLY DOCS COULD FIND A WAY TO FIX MY

LEGS.

GOOD LUCK,I HOPE THIS HELPED

[Guest guest]

Hey - I thought of another surgery option to help - artificial sphincter.

V

[Guest guest]

Hi Moe,

Would you explain what the marker test is that you refer to below?

Thanks,

Kathy

Re: need a little help and guidance

HI MY NAME IS MOE. I AM 42 I WENT THROUGH THE SAME THING FOR ALL MY LIFE..I

AM SO SORRY YOU HAVE TO DEAL WITH THIS!! IT TOOK ME TEN YEARS FOR A DOCTOR

COLLER AT THE LAHEY CLINIC IN BURLINGTON MASS..I FOUND HIM AND HE HELPED ME

RIGHT AWAY .NO ONE ELSE WOULD HELP ONE,BECAUSE ,I WORKED WHILE THIS WAS GOING

ON.I WORE DEPENDS DOUBLE,ALL THE TIME.I WORKED AT FIVE A.M. IN THE MORNING SO

I

WAS ALONE IF I HAD A PROBLEM.IWAS TOLD I DID NOT HAVE A PROBLEM BECAUSE WHEN

THEY DID THE MARKER STUDY THEY ALL PASSED IN 2 DAYS.I DON'T KNOW ABOUT

YOU,BUT WHEN I AM REALLY SCARED OR WORRIED I GET THE RUNS. SO 2 DAYS LATER I

GO

BACK TO THE DOC ,NO MARKERS,LITTLE METAL BEADS,IF YOU NEVER HAD THE STUDY, SO

.THEY SAID NO PROBLEM,ALL THE MARKERS ARE GONE!! THEN,I HAD TO DO THE MOST

EMBARRASSING TEST .THEY PUT PUTTY UP MY BUT ,AND SAID ,OKAY NOW 'HONEY'' PUSH

IT

BACK OUT. I WAS TRYING SO HARD ,I GAVE MYSELF A HERNIA IN THE GROIN

AREA..WHEN I COULD NOT PUSH THE PUTTY OUT BECAUSE OF NO MUSCLE TONE,NO

PARASTOLSIS TO

PUSH THE STUFF OUT. THE DOCTOR ,WHO READ UNABLE TO VOID FOR UNKNOWN

REASONS,KNOWING ,I HAD SPINA BIFIDA.

WHEN I SAW DR.COLLER HE LAUGHED HIS HEAD OFF !!! HE ACTUALLY CALLED THE

DOCTOR THAT READ THE TEST WHILE I WAS THERE. IT WAS GREAT !! HE SAID DID YOU

TAKE INTO ACCOUNT THAT THE PATIENT HAS SPINA BIFIDA,THE TEST DOCTOR ACTUALLY S

AID !! AND I QUOTE '' I DID NOT HAVE TIME TO READ THE CHART. BUT THE BEST

THING WAS, WHEN I LEFT THE TEST ROOM AFTER ABOUT 20 MINUTES OF PUSHING,IT ALL

CAME OUT ALL OF THE SUDDEN.I LEFT A TRAIL FROM THE TEST ROOM ,TO THE CHANGING

ROOM !!DR.COLLOR,SAID HE DESERVED THAT ONE!!!!

ANYWAY,I JUST WANTED YOU TO KNOW YOU ARE NOT ALONE ,I USED TO HAVE AN

ACCIDENT EVERY TIME I LEFT THE HOUSE !! BUT NOW I HAVE A COLOSTOMY,AND A

UROSTOMY.LIFE IS SO MUCH BETTER.NOW IF ONLY DOCS COULD FIND A WAY TO FIX MY

LEGS.

GOOD LUCK,I HOPE THIS HELPED

[Guest guest]

Kathy,

I had one done. You swallow small radio opaque disks (I guess they

could be other shapes) and have an xray of your abdomen several days

later and then several days after that. If the markers aren't there,

then they have made it thru your large intestine. If not, the doctors

can tell where they stopped.

In my case they were still there at day 5 and had all stopped at that

at the end of the decending large intestine.

It's not half as bad as a fecal gram (ha!) where they put peanut

butter textured stuff up your rectum and ask you to push it out as if

having a bm. I couldn't tell the stuff was there at all, and had no

control of it.

V

[Guest guest]

,

I already know I'm pretty bound up and things move pretty slowly (or don't

move, for that matter)... but they have never done this marker test (or even

suggested it). What i was wondering is, when they find out when the markers

stop, how does that influence the treatement? (ie: different from normal

treatment for constipation)?

Thanks,

Jenn

>

> Kathy,

>

> I had one done. You swallow small radio opaque disks (I guess they

> could be other shapes) and have an xray of your abdomen several days

> later and then several days after that. If the markers aren't there,

> then they have made it thru your large intestine. If not, the doctors

> can tell where they stopped.

>

> In my case they were still there at day 5 and had all stopped at that

> at the end of the decending large intestine.

>

> It's not half as bad as a fecal gram (ha!) where they put peanut

> butter textured stuff up your rectum and ask you to push it out as if

> having a bm. I couldn't tell the stuff was there at all, and had no

> control of it.

>

> V

>

>

>