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
>>