Fistula's cont...........

Welcome home, Joce! Behave! Am praying.
MaryJulia

Joce Glad to see you home. Keep resting. And DON'T overdo. I'm praying for all of us.

Kim

Welcome home-take care and rest!

Louise

Glad your home, will call you tomorrow. I feel pretty good today so it is only a few weeks away for you.

Hang in there,

Barbara

Good morning, girls!

It's a beautiful day here in San Diego-I am up cleaning and in a great mood.


Okay, I have more questions for you.

It has been 3 days and I have had no leaking-is that possible with an untreated fistula? I go back to see my GYN on Monday for a 5 week check up, and I want to be able to sound like I know what I'm talking about! So, is a fistula stilll a possibility? I am having some major bladder spasms today-but hoping they will go away-if not, I have a Pyridium stashed just in case.

Take care of yourselves today!

Louise

Hey Ladies,

Today the bladder spasms are the worst ever. The urologist's office is changing me from Detrol LA to ditropan and said to take 600 mg ibuprophen 3 X day. I got a huge hematoma on the back of my right hand from bopping something at the store today. Didn't even feel it. I'm a little worried about all the ibuprophen with me bleeding like this, but they said I needed it for the anti-inflamatory aspects.

2 questions: Did ya'll find anything else that helped with the spasms? Ariel in specific-did you ever just about feel like you were going to pass out with the ureter thing? Sometimes I feel like I'm about to faint and then it passes. The gyn said that there are nerves in the ureter that can cause a vagal response like that or something.

Today I'm sad and in pain. Still I'm thankful to be a month down the stent road. AND I'm so glad for the recoveries of Ariel, Barbara, and Hans.

holler if you have any ideas!!

Hey Louise, it is possible for holes to heal spontaneously. I hope that is what has happened in your case.

MaryJulia

Welcome back Hansolo! Amazing how sometimes the cure seems worse than the disease. But sometime it does have to get better.

Louise, fistulas can heal on their own though it isn't common. Depending on what kind of fistula and its location its possible for the amount of leakage to vary wildly.

MaryJulia, I'm ready to rip the stent out myself. Its causing constant spasms and pain. If I walk too much or stay in the same position I get the usual signs of severe pain...dizzy, cold sweat, short shallow breaths. At this point I'm counting the hours till it comes out. How pitiful is that? And since I'm convinced I'm going to start leaking the minute they take it out I'm not sure why I'm in such a rush. But we'll see what happens

Hugs all around,
Ariel

Hey girls,

Sorry MaryJulia and Ariel you are having such problems. OK MaryJulia the stuff that they gave me at Mayo stopped the spasms completetly they are the suppositories called B&O. O is for Opium which is a class two drug, so you Pharmacy will most likely have to order them. My Dr. at Mayo said that it is the only drug that will stop the spasms because it puts the bladder to sleep. My problem came in the third week when my body would not take the meds. anymore. As soon as I stopped I had horrible pain and spasms. YOu may want to call your DR and ask him for them. I had no feeling of being doped up, just put the bladder to sleep. Good luck. Ariel you only have a few days left, not worth the effort to get the drug. I know that it is going to be OK for you once they take the stent out you will be dry. I am so freaked myself that I keep checking my pants!! I am dry and only wearing panty liners.

Lousie, do you have a catherter in now? Sometimes the Fistula's dry up after you keep the catherter in for a while. Hopfully that is what is happening to you.

Kim, the countdown has started, you are less than a week. With all this great information how can you go wrong!! You will be in my prayers, if you want to e-mail me your phone number I will call and post for you after the surgery? bannonhouse@comcast.net

I went to work today for a half day and then went for a pedicure.
Life is good again and even though I am scared this thing will come back, I plan to move forward and live again. The end is near for all of you soon, we will just stick together until then.

Barbara

Hi Ladies!
Please help me . . .
I need some advice. I had a TAH in March 2002 for extremely severe endometriosis. My colon was nearly cut through all the way and then I developed several very complicated fistulas. I have two coming into my bladder from somewhere along my intestines and one coming into my vagina from my intestine and also one from my bladder to vagina. I was quite ill for many months and am still maintaining on antibiotics.
What I need help with is locating a surgeon that can resolve this.
I saw a urologist two weeks ago and upon a cysto he saw two connections into my bladder. One is real near the link to my left kidney and he said that I need to find the very best surgeon that I can. He said that the best surgeon on their best day will have a tough time. I am so upset and have been extremely distressed for nearly 8 months. How do you find the very best and get beyond a receptionist or even the clinical staff or talk to someone that can get me to the right surgeon?
Also, do they resect the bladder to resolve the fistula's?
I am so concerned that I will come out worse than I am now.
Any information you could provide me would be very helpful.
Thanks!
Anita

And here I thought it was bad with just one fistula! I don't know how you've put up with it for the last 8 months. My heart goes out to you and I wish I had some answers for you.

You don't say where you are in MN, but what about The Mayo Clinic in Rochester, MN?

Different fistulas are fixed by different methods. For a uterovaginal fistula the ureter is reimplanted in the bladder. Though typically a stent will be insterted first to stop the leakage and allow the ureter to heal on its own if it can. Or, a nephrostomy tube is implanted to allow the urine to drain from the kidney.

For a vesicovaginal fistula a separation is created between the bladder and vagina by creating a "flap" I may be wrong on this kind of fistula, but Barbara or Hansolo will be able to provide you with a lot more information about the surgery to repair it.

I would imagine the other fistulas are repaired in a similar manner.

Other than the antibiotics have your Doctors done anything?

Please keep us advised of your progress in finding a surgeon, and of course to lean on us for whatever you need.

Lots of big hugs,
Ariel