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My DR thinks I have a fistula My DR thinks I have a fistula

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  #1  
Unread 04-09-2003, 11:06 PM
my dr thinks i have a fistula

Hello all,

I have spent the last little while reading every post on these threads and am very grateful. I went to my dr today to find out why I've been unable to hold *any* urine since thursday. Well, I am scheduled for an IVP tomorrow morning and uro following, because my dr suspects a bladder fistula.

He sent me home today with a foley cath (what an awful feeling) but very little urine is going in the bag....it's all still leaking from my vagina. I am just so miserable right now. For one thing, the thought of being unable to work for even longer, or having to wear this cath when I do work is almost unbearable. I am a single parent and my resources are very rapidly depleting after just 3weeks off work.

Sorry for whining...I am just so discouraged right now. I don't really know what to do. I've tried so hard to teach my girls to be strong by example (their dad died 2 years ago, so it's just us) but right now I don't feel very strong at all. I have spent much of the day crying today, and cannot seem to make it stop.

Anyway, I'm not really asking for advise....these threads have given me more info than I could hope to ever find anywhere else....I guess I'm just thankful to know that I really am not alone in this. I had no idea this was as common as it seems to be here.

Thanks for listening
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  #2  
Unread 04-09-2003, 11:55 PM
My DR thinks I have a fistula

Hi. there are many of us on this bumpy road, you are not alone. This site has been a lifesaver to me, . I just had my fistuula repaired vaginally last tuesday, Please feel free to email me at [email protected]. We are all here to lend a houlder to cry on , or a hand to hold . Many s and help along the way on this road less traveled.
I can relate totally to the catheter , I had mine for 9 weeks, just got it out today.

I haven't been back to work since my surgery Jan 21, hopefully I can go back 4-21-03. I'm pinchin my pennies so tight they squeek.



Hang in there sis, it will get better.



:hug;


Jan

tah/bso/endo/ adeno/ ovarian cyyts/ 1-21-03
v v f repair vaginally 4-1-03


proud to be a hyster sister
  #3  
Unread 04-10-2003, 07:22 AM
My DR thinks I have a fistula

K,

Glad you found this site. I too am one of the fistula ladies and am going for a cystogram and IVP next week. Keep posting and let us know how you are doing. We are here for you. The support on this site is the best. We have all been through the ups and downs of a fistula.

You sound like a very strong person and a great mom.

Praying for you,

Sherry xo
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  #4  
Unread 04-10-2003, 09:02 AM
My DR thinks I have a fistula

Kim,

So sorry to hear that you have to go through this.I am also one of the "fistula ladies" I had my hyster on Oct 16, and developed a fistula which showed up 10 days later. I had the foley for about 7 weeks and finally had the repair Jan 15, and am doing pretty well.

It is not supposed to happen this much, that's the problem! a fistula is only supposed to be a "mistake" made during a difficult hysterectomy, roughly less than 2% of hysterectomy patients develop a fistula. No one ever hears prior to having a hysterectomy that this might happen which makes me mad!

This is a great place for support and most importantly, a place where you can express all your anger, fears, and frustrations-we've all been there! I know you feel like you can't get through this, but you will 'cause you have to! Just take it one day at a time, post here when you need to, and lean on the people who love you for support, it's time to take care of YOU.

I am back at work (since Mar 3) so I don't get to post as much as I used to, but there are some great ladies who are still in recovery and will be here for support. You can e-mail me if you want and I will be here when you need to talk. hang in there and remember, it will get better and this will be just a very short time in your life and soon you will be back to normal.

Lots of hugs to you,

Louise
  #5  
Unread 04-10-2003, 09:45 AM
My DR thinks I have a fistula

This sight has been a savior for me too. I only wish I knew about it while I was going through the fistula event and repair. All of we fistula sisters know how you feel. You are not alone. Take each day as it comes. There will be a light at the end of the tunnel.

My TAH was in Nov. and I had a vaginal fistula diagnosed 10 days postop. I had to wait until Feb to have it repaired. I just went back to work March 19th and right now I'm waiting to hear from my GYN to get an appointment as I had blood on my underwear yesterday and pain to the touch of my stomach. She thinks it's a UTI so I will go in for an urinalysis and check. HOPE I haven't ripped anything. I did go for a short jog the other day....

ANYway....please take care of yourself. It's OKAY to cry. It's okay to feel what ever it is you are feeling...angry, sad....whatever.
It's a bumpy road AND you are strong and will do okay.

I'll be thinking of you,
Renee
  #6  
Unread 04-10-2003, 10:40 AM
hugs

Hi,
I'm so sorry you are dealing with this. There are wonderful ladies here who have been through it all with fistulas and bladder troubles. I had a foley for 23 days after my bladder sling surgery, partly because there was a hole caused in my bladder during the surgery which was fixed right away. I had a lot of adhesions and a previous Burch procedure with my hyst, which had failed. The uro had to undo the previous surgery and do a lot of repairs. The foley can be very hard to deal with, I can't imagine having to go to work with one, I had planned to be off from the surgery and the foley really bothered me. If you are leaking so much vaginally, is the foley really helping? I don't know a lot about the fistulas, so I'm certain the others here who dealt with them can help you more. But, I just wanted to say I understand and will keep you in my prayers. It's so frustrating to have to work and go through all these health problems. I've been working from home the last 2 weeks and officially go back on Monday. I'm dreading it because I'm still so tired. Keep us posted.
Love, Light, Blessings
Druid
  #7  
Unread 04-10-2003, 03:10 PM
My DR thinks I have a fistula

Hi Kim

Just want to start with a warm for you!! I have been right where you are sister- and it brings all the memories back.. I had my fistula diagnosed 2/1/03(by Myself), repaired 3/18/03 and just got my supra-pubic cath out today and I am here to promise you that you WILL get thru this and I and all our other sisters will help you!!

You are still trying to digest all this and it is OK to cry and feel awful- because you do. You will feel better in time.. I am glad all our threads have helped you and hopefully eased and answered some of your questions..

The foley is a pain in the butt- I had mine for about 8 weeks and then supra for 3 1/2 weeks and the leaking really does stink.. I would call Dr and check on that though.

I am praying for you and hope you feel better soon.. keep us updated and let us know how you are doing.. I check in all the time and am here for you sweetie.. You have to stay strong for your kids- I had to do the same thing with mine and they truly did inspire me to feel better, as well as help me more than I ever thought they could!!

  #8  
Unread 04-10-2003, 05:03 PM
My DR thinks I have a fistula

You ladies are pretty amazing.

Thank you so much for all the kind words.....I know that you all realize how much they mean in this situation. I have read and read everyones advise and encouragment on the other threads and they have made so much difference. I am still having my moments today, but it takes a little more for the tears to come. Today I am more angry than anything I think.

I had the IVP today. After 2 1/2 hours I found out that in addition to whatever else turns up, there is some sort of problem with my right kidney....it wouldn't drain the contrast dye properly. The radiology dr was having a fit because she couldn't get me into uro til tomorrow. (Oh, btw, all my medical is done through the VA Hospital....no insurance) Something else to add to my list I guess.

Anyway, I will update on my uro appt tomorrow. Hopefully he will at least take this foley out, since it seems to be doing no good at all. Barely anything makes it into the bag. The rest has apparently found a very easy route from bladder to vagina someway!

Thanks again ladies. Your words are priceless to me.
  #9  
Unread 04-10-2003, 10:22 PM
My DR thinks I have a fistula

Hi Kim

I can not say I know what a vaginal or bladder fistula is like, but I am getting first hand experience of what a RECTAL one is like!!!:cry:

I was just diagnosed Monday with it after being checked out to have a hemerrhoidectomy with my bladder and bowel repairs. The pain from that exame was by far, the MOST PAINFUL thing I have ever experienced in my life!!!

You are in the right place for support and help through this! I know how it feels to have a diagnosis turn into more than you bargained for, just look at my signature and the list of problems that keep coming one right after another. Believe me, it is good to cry and get it all out, or at least a little out, it never really goes away. I cry at least once a day.

As for showing your kids you are strong,,,,,, they KNOW you are a strong person, fortunatly your kids will never see you as a weak person like some people in the outside world with no medical problems may see you. You have been their rock and they will love you and look up to you unconditionally!!! I KNOW this because I have 2 of my own and a military husband that has spent more of their lives gone than at home, so I am the primary caregiver and the mother and father most of the time too. I look up to those single mothers that have lost a spouse and keep their family strong. Sont EVER doubt the unconditional love of your kids or ever think that if you breakdown once in a while in front of them that they may think you are weak. In the end they will see how hard you fight and it will make them stronger!!!!!!! Sorry to go on about this, I am having an emotional outburst right now just typing it because I feared the same thing. Talk to your kids and tell them what you are going through, if they are old enough to understand. They will become your rock when you least expect it!!!

Feel free to cry here whenever you need to. We have a very large amount of shoulders here and will help you through this!!!

  #10  
Unread 04-11-2003, 04:21 PM
My DR thinks I have a fistula

Hello all....

Well, I saw the urologist today and...with all my fingers and toes crossed for luck....this may be a lot easier than either he or I expected it to be.

The fistula is in my right ureter (sp?), near my bladder. Next tuesday I go in for day surgery and hopefully he will only need to put in a splint so it can heal on its own. That is, if there is no damage to the bladder itself. None could be seen on the xrays, but he said hidden problems are possible and they need to make sure, so he will go in with a camera (vaginally) and check my bladder and both ureters to make sure they aren't missing anything. If, by chance, they find damage to my bladder, then I iwll have to wait til I am 6 weeks post-op from my hyst and they will go back in through the same incision and correct everything surgically. YUCK!

But the best news of the day is......he took this darn cath out of me!!!! He agreed right away that it was fairly useless at the moment. And I realize that I may have to have it in later, and that's ok. If I do it will at least be able to serve the purpose it was meant to do at that point.

I feel so much better for now. I'd appreciate any thoughts and prayers that can be pushed my way though. And if it turns out I need more surgery, then I think I can deal with it. I've had a chance to think all this through, and since I now know more of what's going on, and the kidney thing is directly related to the other and is all fixable at once......well, it just all seems a lot more workable now.

Anyway....enough rambling. Thanks for the support I've been given here already.....I'm looking forward to being able to offer the same kind of support to others someday soon.
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