> Dear karla
>
> Bless your heart, you have told the story in detail better than even I
> as a trained nurse could have. God help anyone who trusts a doctor that
> is so frustrated and tired of hearing about adhesional pain that he/she
> opts for this barberic surgery.
> ALWAYS GET A SECOND OPINION TO YOUR SECOND OPINI0N!
>
> Hugs
>
> ginny
>
> At Thu, 15 Nov 2001, Karla wrote:
> >
> >Ginny,
> >
> >I cried when I read your message. You have said it so well. I am only
> >afraid that people will think that you are exaggerating....you aren't.
In
> >fact you left a few things out. Do you mind if I make my additions?
Other
> >than these few things that you omitted you have described my life to a
tee.
> >
> >Yes, you mentioned leaking urine. But, I have to tell you, it isn't a
> >matter of a drip here or a drip there....or even a bit of dampness. Its
> >called out and out leaking. Like a waterfall that continually flows. So
> >bad that you have to wad up paper toweling or even use towels to wrap
around
> >the urostomy. You can't just stop everything you are doing and go fix
it
> >because you need to lay down to do that. You'll be sitting in a
restaurant
> >or heaven forbid someone's car when your seal bursts and urine gushes
> >everywhere...all over the seats and all over your clothes. And because
you
> >have a urostomy your abdomen is weak surrounding the site...so that you
keep
> >herniating despite the doctors putting mesh all the way across your
abdomen.
> >They could put in layer after layer of mesh and still you end up with
> >hernias...not just one, but an abdomen full of them. The hernia that
> >surrounds your urostomy (becomes about the size of a football) prevents
you
> >from maintaining a seal of your appliance and bag...so the leaking is
> >constant. You put an appliance on and ten minutes later you are leaking.
> >And you are afraid to go around friends...let alone strangers because you
> >just know that you reek of urine. You are also afraid to have a
> >relationship with a man...not just because the bag gets in the way, but
> >because you are afraid that you might wake up during the night to a
soaked
> >bed...and him swimming in it. And at this stage these aren't just things
> >that could happen...they do and they happen regularly.
> >
> >If you are lucky you can go awhile before you begin to have other
problems
> >related to your new urinary diversion....kinking off of the ureters
causing
> >urosepsis. Urosepsis is no fun...it in and of itself can kill you if
they
> >don't catch it. With urosepsis the infection isn't just in your
urine...its
> >throughout your body...including your blood. First you have an isolated
> >episode...then they become more and more frequent to the point where you
> >have them one after the other. And you go back to the surgeon who did
this
> >surgery to you, because now your kidneys are affected and if they don't
go
> >in and redo everything, straightening out the ureters and doing a new
> >urinary revision you will die. You will die because your kidneys will
> >eventually shutdown. They'll tell you that dialysis isn't an option for
> >you...and that transplant is an option, but virtually noone will do it
> >because you are such a risk. And to be put on a transplant list?? You
> >would be about at the bottom because of those same risks...so you better
> >hope that you have a match willing to donate. But...then you still have
> >the hope that those original doctors...you know the ones that caused you
all
> >of these problems...might be able to do something to help save your
> >life....yes you hope a lot (praying too) until they tell you no....we
> >aren't going to touch that mess.
> >
> >I am not saying this to scare anyone...just trying to prevent someone
else
> >from living their life like I do. Its real it happens. Don't let it
happen
> >to you.
> >
> >--
> >Karla
> >
>> >>----- Original Message -----
> >From: "Ginny Halpern" <gingin99@home.com>
> >To: "Multiple recipients of list ADHESIONS"
> ><adhesions@mail.medispecialty.com>
> >Sent: Thursday, November 15, 2001 7:43 PM
> >Subject: The 'Pumpkin Procedure'
> >
> >> Dearest Friends:
> >>
> >> I have not been on the board for months since I have been working on
> >> individual e-mail referrals from Dr Wiseman and making a consorted
> >> attempt to help each of you. But I recieved word that some blithering
> >> idiot, knife-crazy surgeon is suggesting a complete pelvic "gutting" to
> >> relieve the symptoms and cause of adhesions and I have to throw my two
> >> cents in.
> >>
> >> THIS IS CRAP in a cradle! I agree with Bev when she says that this is
no
> >> less inhuman than the disembowling of humans in the middle ages. As a
> >> nurse and an adhesions sufferer for 20 yrs, let me tell you that this
> >> surgery was once called "Pelvic Exenteration" and it is indeed like
> >> gutting a halloween pumpkin.
> >> You are a person with pelvic or abdominal adhesions. Probably between
> >> 20 and 45 yrs of age. You have had more than two operations and your
> >> adhesions and subsequent pain have returned. So, the frustrated
surgeon
> >> says, why not remove all viable, healthy organs from your pelvic
cavity,
> >> including your bladder, bowel, intestine, uterus, ovaries and tubes and
> >> replace them with colostomy bags, ureterostomy tubes and drainage bag
> >> (bladder replacement) and, if he or she decides to remove the majority
> >> of your stomach, a gastrostomy tube for feeding purposes so that you
can
> >> look forward to three meals a day for the next 30 yrs of a high protein
> >> liquid diet that is running into a feeding tube in your belly. Neat-o!
> >> Just think....no more steak and potatoes!
> >> Let's not discuss the probability of stomal infections (bacterial or
> >> yeast infections that grow around the openings where your colostomy and
> >> ileostomy bags hang)or the probability of having blocked tubes that
will
> >> require frequent visits to the ER for irrigating (unless of course they
> >> train you to irrigate your own tubes) You think your sex life is ho hum
> >> now?
> >> Hopefully, you have a loving, accepting mate who will not mind romantic
> >> evenings playing dodge-em with the various plastic bags filled with
your
> >> bodily wastes hanging underneath those swell little Victoria's Secret
> >> frocks..
> >> You think adhesions are painful? Wait until your colostomy blocks off.
> >> Hate leaving the party early because your belly is cramping from
> >> adhesional pain? Just imagine having to leave because your colostomy
bag
> >> is filled with gas or your urinary drainage bag is leaking.
> >>
> >> COME ON FOLKS! If this is "modern medicine" then please give me a
> >> rational explanation of how healthy young people are to function in a
> >> better state once we've been gutted like a Jack-O-Lantern than we did
> >> while suffering with long term ARD!!
> >> I was offered an Exenteration 7 years ago as a final option to my
> >> suffering with advanced pelvic adhesive disease. I laughed in the
> >> doctor's face and cried for weeks afterwards, just imagining my life
> >> without my guts!
> >>
> >> There are new treatments being tested and perfected every day and we
are
> >> so close to a "cure". Let's not allow some Jack the Ripper surgeon to
> >> carve us like a Thanksgiving turkey simply because we're tired to
> >> hurting.
> >>
> >> Hang in there, my loves. I am begging you to seek second or third of
> >> fourth opinions before you allow anyome to slice and dice you. Not
only
> >> is it barberic but it is irreversible. Once done, It is forever.
> >>
> >> Hugs to you, and feel free to write me if you like: gingin99@home.com
> >> ginny halpern
> >>
>