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Just found out I have a fistula Just found out I have a fistula

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Unread 02-05-2003, 09:46 AM
Just found out I have one too!!

Just found out this morning that I have a fistula - my GYN said it must be small she can't see it- but I am peeing more than I was..

Stupid questions- can they get larger as the days go on.. I am off to uro at 3:45 and do not know him--the one I want does not take my insurance so I must see this guy for the catheter.. can you give me a little step by step on this and also if you have any good questions for him- I told dh if I am not fully happy with him, we are going to Yale/New Haven Hospital- which I just might do anyway..

Any info would help- I have been crying all morning- but now have to get a grip on myself.. Thanks for all your help

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Unread 02-05-2003, 10:12 AM
Just found out I have a fistula


We are all at different stages of recovery. Judester is in the process of being diagnosed, we have several ladies who are facing surgery soon (Terry & Anita) and others who have had recent surgery (Sherry & Me) and then there are the grand gals who had there surgeries a few months ago (Joce, Kim, Barbara, MaryJulia) and continue to offer us great support! Linda (aka Surferbabe) is a hostess who is our guardian angel.

We have all gone through the catheters and tears, we are here to help you in any way we can. Ask us anything, nothing is off limits! You are not alone.

Unread 02-05-2003, 10:20 AM
Just found out I have a fistula

Hi Louise

Thanks for the welcome- I will look up the other threads..just still in shock here- I am doing a web search also to inform myself.. thanks for the support- I will need it!!

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Unread 02-05-2003, 10:25 AM
Just found out I have a fistula

Good Luck Karen,
I will be thinking about you.
Unread 02-05-2003, 10:26 AM
Just found out I have a fistula


Check out emedicine.com and do a search on fistula-it's the best we've found!

Unread 02-05-2003, 03:03 PM
Just found out I have a fistula


Sorry to hear that this has happened to you also. Seems to be happening more and more. Never even heard of this before my hyster. I think alot of people just don't talk about it. At first I was embarresed. Then I thought what the heck.

The main thing to remember is it will get better. You will be fixed and your life will get back to normal. Keep your head up and think postive. God will take care of you. You have this site as your biggest support. Don't know what I would have done without these ladies. They are wonderful.

I am almost 2mo. out and no leaking. It takes awhile to get here or at least it did for me. Was always scared that the leaking would come back. Would always feel strange and think oh no. I think all the ladies that have had the surgery has had good success. So your day is comming.

Take care and I will be praying for you.

Unread 02-05-2003, 03:24 PM
Just found out I have a fistula

Hi Kim,

Thanks for the kind words- I am about out of my mind right now!! DH keeps telling me it will be OK- But I still can't believe it!!..

Just got home from URO- and I was not comfortable- I think mainly now I am not trusting anyone!! Have to have a cystogram and cystocel(sp) on Friday- how is that!! please tell me not to bad.. he told me what it was and I darn near jumped out the window and I am no baby by any means- tomorrow I am calling down to Yale/New Haven Hosp. to see what they say- whatever needs to be done further will be done there I guess.. and to top it all off my DH is changing jobs- so don't know what insurance will be for this- oh my God I am nuts.. let me know any good hints- I still have no Cath so as not to inflame anything- but leakage has gotten worse today- so now I am afraid to eat and drink and I know that is crazy- anyway have to run- my 4 kids will be home soon..
Cyber z to all- and is anyone near CT or been treated in CT or Westchester County in NY and have a referrel for me.. I have so much to say- I have to go.. I will write later
Unread 02-05-2003, 04:01 PM
Just found out I have a fistula

Karen - welcome to the club! My name is Jocelyn and I am one of the fistula ladies from this recent onset of situations. Please, please go to the thread "vaginal urination" and start from the beginning. Forgive us all for our tears and rages, but I think you will find comfort in reading our stories. Granted, there's lots of chit chat, but that is one thing that kept me sane during "the dark times, the times of the fistula" (a favorite line from "Star Wars").

I can't tell you how sorry to hear this has happened to you, but it will be O.K. I had my hysterectomy on 8/06, fistula popped out 8/25, had my repair on 11/12....a long time inbetween. Had the foley catherer the whole time and thought I wouldn't make it, mentally and physically. But I did, and believe you me, I'm stronger for it and made lots of new friends in the process. Learned a lot about a subject I really didn't want to and got to wear lots of black stretchy pants from Goody's. I also know the best urine bags on the market and how to sleep with your toes curled together as to not move the catherer too much!

I know it's not funny to you now and it's not funny to me, either, but making jokes helps, you have to keep laughing to keep from crying. DH sounds like a prince, so keep him in the loop and get as much help as you can from everyone.

The ladies on our threads have been life savers to me and kept me going.

A piece of advice - get the best medical help you can. This is not something you want to mess around with. You want it fixed the first time.

emedicine.com is the best.

Depends are good, Barbara didn't have a catheter and she folded lots of tp along with a pad inside the Depends.

Keep up with all your expenses.

start a notebook with research and a calendar.

drink lots of water and eat lots of chocolate.

Always know that someone is here on this thread (Louise is our leader now), and do emails if you need to.

I could go on and on, but will close for now. Check on you tomorrow.

Love to you and hang in there. Jocelyn
Unread 02-05-2003, 04:24 PM
Just found out I have a fistula


Reading your post brought back a flood of emotion for me-trust me when I say we know exactly how you feel-we've been there!

The cystoscope is not bad, just a little uncomfortable(HONEST). You might have an IVP also which is basically an xray where they inject dye and follow it through your urinary tract to find the fistula.

Don't hesitate to use the depends diapers, I hesitated till the girls convinced me I would be more comfortable(they were right!) I also used a pad with the diapers, just in case. You get used to it-it's better than worrying about leaking through.

Ask the drs lots of questions about how many repairs they have done-you don't want to be anyones "first" I switched drs till I got the head of the gyn/oncology dept who has done alot of fistula repairs(I found out that cancer patients who have had radiation therapy often develop fistulas)

I don't know what kind of fistula you have and alot will depend on that-if you have a hole in a ureter, they will most likely put a stint in to see if it will heal on it's own-if you have the hole in your bladder, they will most likely insert a foley cath for a few weeks to give the fistula time to "mature" or heal on it's own. It also gives your body a chance to heal from the hysterectomy. Most of our drs have followed what you can read on emedicine almost to the letter.

Please try and stay calm-this is a big pain but you WILL get through it-we are proof of that. Try and rest as much as you can-that's about all you can do. You are in our thoughts and prayers and we are here for you.

Unread 02-06-2003, 05:29 AM
Just found out I have a fistula

Hi Louise,

Thanks for the shot in the arm- I am actually on my DR hunt today-just don't really want to go in hospital tomorrow plus it is suppossed to snow here tomorrow also, I just can't get a break..

Anyway can you tell me of your leaking got worse- mine seems to get worse by the hour- it does stop though when I lie down very still.. I don't know- was up alot crying all night and can't look at my children without bursting into tears- but I hope it will pass soon- could you take a nice walk with the foley or is it to uncomfortable- I need to get my endurance back as I have been doing just about nothing for 2 weeks..well I'm off to eat and take meds- I still have an infection and now am on Cipro- and that is making me sick.. just have to dig deep today I guess.. thanks guys and talk to you later..

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