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 >