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Fistula strikes yet another sister Fistula strikes yet another sister

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Unread 06-06-2003, 08:15 PM
Fistula strikes yet another sister

First things first...WAAAHHHH!
Oh, why, why, why can't this be a bad dream. I must have been a really bad person in my previous life because karma is really punishing me.
Okay, I had a TAH on April 23rd and about 3 1/2 weeks post-op I started leaking all the time. I had several UA's and CBC's and was on two rounds of antibiotics because Dr thought the incontinence was stemming from a UTI. Well that didn't work so he then tells me I have overactive bladder and begin Oxybutinin patches, again no results. I have been telling my DH from the begining that it felt as though the urine was leaking out the vagina. I thought this was just anatomically impossible. I did a lot (a whole lot!) of researching. I decided that I was going to do my own IVD test. I took a vitamin that was had high vitamin B. The vitamin B is what makes the urine neon yellow. After that I inserted a tampon. Low and behold as long as the tampon was in, I wasn't leaking. I waited a half hour and removed the tampon. Sure enought it is saturated. WAHHHHHHHHHH.!!!
So I had a standing appointment with a urologist on the 10th. Both he and my OB/GYN are out of town. The OB/GYN that is covering mine is about as useless as can be. She says that I have lived with it this long, I can wait until my doc's are back. Oh she is a real peach.
So, I am really depressed about this. There is so much going on in my life right now. Including trying to get my own place so I can get me and my girls away from my verbally abusive husband.
I am pretty much banking on the fact that I will be cathed for at least two weeks while praying the fistula will heal on it's own. What we still have to find out is if it is vesciovaginal or if it is in the ureter (forgot that name). I can't do this. I can't handle this. WHY????
I am sorry. I don't mean to be all whinny. I just really need to be in contact with people who are familiar with this. Please help me through this?
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Unread 06-07-2003, 06:33 AM
Fistula strikes yet another sister

Yes you can handle this! Why because you must for your girls. You are in shock right now but as things fall into place it will get better, very very slowly. Please believe me when I say my heart is with you.

Unread 06-07-2003, 07:05 AM
Fistula strikes yet another sister

Oh (((((sweetie))))) I'm so sorry you're dealing with so many issues all at the same time No wonder you feel like you won't be able to get through this: I know the feeling, because I've been there myself

(((((Sweetie))))) I'm convinced that you'll get through this. You'll do it for your girls, but you'll also do it for yourself. How do I know? Because I'm a woman and women are like this: even though we appear to be weak, we're strong, we're determined and... at least in my case... we're stubborn enough to make it through all this adversity.

And... when life gets to be too much, your Hyster Sisters are always there for you. And right now we're ing that this fistula is the kind that will heal itself.

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Unread 06-07-2003, 09:39 AM
Fistula strikes yet another sister

Dear Abby,

Yes I agree, we woman CAN go through anything. We are strong. Just remember to take one day (or even one hour) at a time. Some days will be better than other days....some will be worse.

Your're story sounds very similar to mine....except that after 9 day I insisted on a message being sent to my GYN so I was cath'd in her office on that day. Hyst. was Nov.4, 2002 and I was cath's on the Monday before Thanksgiving.....until 4 weeks after repair....which hopefully was successful. (Repair was exactly 3 months after hyst.)

We fistula sisters can really relate to you and ALL you problems. I was lucky enough to have a very caring husband. I'm sorry you are facing abuse too. Do you have any family you can go to?

Know we are here for support. Ask any questions you want and don't feel like your're whiny....we all have done that.

Take care,
Unread 06-07-2003, 06:33 PM
SOOOO Sorry : (

Dearest ((((ABBY)))

I feel so for you sweetie- it was not that long ago I was in your exact place- and it is OK to feel bad, cry, mourn, weep and feel sorry for yourself- they are all normal emotions.. until you get an answer and a plan you are in limbo, BUT we are all here for you!!

It does seem like an eternity, each day and sometimes each hour-but you will get thru it and you have to for your girls- It brings back all the emotion for me, but I am now almost 3 months post from 2nd surgery and doing well. Please come and visit here anytime- we are all around for eachother- the Dr filling in sounds like the one I got when I was diagnosing myself(just like you have done)- they were all to busy blowing me off to see me- and that just adds to everything..

But it will get better and please keep me posted!! Sending a big and look forward to hearing from you soon!!
Unread 06-07-2003, 09:03 PM
Fistula strikes yet another sister

Hey again. I just wanted to say thank you for the support and encouragment. I really do feel like I am in mourning. I have this heavy sadness. The things I used to enjoy or the things that use to make me laugh I have almost become numb to. I know I am slipping into depression. I am trying to fight to stay on top of it, but everytime I even begin to smile, or to laugh it's like someone tapping me on the shoulder to remind me what I am facing and it quickly wipes away any glimmer of happiness before it really gets a chance to manifest.
Does anyone have statistics? What are the chances this will heal on its own with the foley in place? If I do have to go through surgery, what is the percent of success? I have read about so many ladies having two and three surgeries. I am so, so terrified that the hole will be unfixable. I think I have another UTI also. Just yesterday after I go, my urethra burns so bad. I hear that it is common to get one uti after another with a fistula. Maybe it is just bladder spasms though. On top of that, I am getting a yeast infection from the two rounds of antibiotics that I was on with the last uti. My daughters (ages 4 and 3) think it is really cool that mom has to wear pull-ups too. It is nothing for me to saturate an adult pull-up during the night. The girls still love me the same.
What doesn't kill us makes us stronger......I keep telling myself that. That is kinda like the silver lining to the dark storm cloud. I can just think of a million other ways to make me strong.
I have my appointment with the urologist on Tuesday. I will probably post before then, but I will still let you all know how the appointment went.
God bless you sisters. I am so greatful that I have you to lean on. My friends and family are wonderful but they really can't sympathize with me because they just don't really know what it is like.
I am sending 's to all of you
Unread 06-08-2003, 05:40 AM
Fistula strikes yet another sister

HI Abby

Just know that you are NOT alone and many of us have been there- and me not long ago!! As for the fistula healing on its own- you can hope, but the truth is it rarely does happen and they will probably need to do surgery.. I thought mine was healed and it was small- but it was not and I knew it wouldn't because I still leaked while waiting to heal and recovering from hyster..

It is wonderful that your girls can keep you sane- I have 4 children and they were so good thru all of this, as I was not able to do much of anything- they are older and had to explain to friends etc. why as best they could- they could not do much while Mom was recovering. Each day does get better as you get used to life with the cath and once you get to URO and have a plan that helps to. Please make sure though that he/she has done alot of these procedures before and this is not their 1st time- as you have learned they are tricky to fix and you want it done right the 1st time.

Do get checked again for the UTI- I was lucky and only had one- have them give you some Diflucan for the yeasties- it works well and my DR just put in on a refill, so when I felt one coming I just called the pharmacy and had it ready. You might be having spasms to in your ureter- I had them ALL the time and still do. It was worse for me after 3pm when I had moved around during the day- which really wasn't to much anyway- but the cath for me aggravated me alot and I was good for nothing after that. I did drive after a few weeks- just strapped the bag to me left leg and went out if I had to. I hope this helps and remember I am here for ANYTHING that you need. Try and have a good day.. sending a big and
Unread 06-08-2003, 10:36 AM
Fistula strikes yet another sister

Dear Abby,

While I was going through this "nightmare" my urologist kept scheduling the fix-it surgery every two weeks and every checkup with him before the scheduled surgery he'd say to me....nope not healed enough from TAH....let's wait for two more weeks, and it went on and on like this....for 3 months.

A bit of history....I'm a tax preparer and I schedule my TAH in early Nov. so I'd be ready to work the tax season...The doctors knew this....and even though I was REALLY anxious to get the fix-it surgery overwith my urologist would NOT fix me until I was healed. He explained to me that I needed to have good tissue to use to repair the bladder....

So it took till Feb. 4th for the fix surgery and yes I lost my entire tax season and $$$ for the year. I feel that my urologist did best by having me wait until I was healed from TAH...

Also, IMHO he wanted to fix me vaginally but couldn't guarentee that he could reach the fistula (my hole was high up, posterior, and quite large) and I struggled with a vaginal procedure and FINALLY decided to go with another abdominal cut because *I* felt the chances of the fix were to my benefit. JUST A FEELING????

No one will ever know if fixing me abdominal was the best way....I just knew I wanted it fixed ONCE and even though it was (and still is) hard to go through TWO abdominal surgeries in 3 months I am really happy that I chose abdominal surgery because IF he went vaginal AND it didn't work...I would have, well I guess I would have delt with it JUST as so many sisters are doing....

Sorry to ramble. I just wanted to say...LISTEN to your doctor, AND MORE IMPORTANTLY listen to YOUR gutt feelings. And I'm sorry to say that unless the fistula is a pin won't heal on it's own....AGAIN...I'm not a doctor just have been reading lots.

Good luck Abby...I will be thinking of you and KNOW you are not alone.

Unread 06-08-2003, 07:04 PM
Fistula strikes yet another sister


I just wanted to drop in to see how you're doing. I see alot of our dear sisters are taking good care of you.
I know all the info we're giving helps but also is scary to hear. Just take one day at a time and you'll get through this. Most of the time it's just one repair surgery and you'll be all fixed-there are several gals that have come and gone on this site, and they're all healed and going on with their lives. The statistics for the fistula to heal on it's own are less than 5%-but you could be one of them! Like Karen said, make sure you get a dr that has done this surgery-that part is VERY important-it's not an easy surgery so if they say it is-find another doctor!
Give your self some time to adjust-kids are so sweet and accepting of almost anything-let them help as much as they can, I know they're little but they love to "get things" for mommy.

Take care and I will keep you in my prayers.

Hugs, Louise
Unread 06-09-2003, 06:46 AM

Thanks Louise, thanks everyone,

I have been trying to read every post on here about V V F. I did feel like I was knocked backwards and found myself kinda stunned or reeling from all the information. I feel my heart racing when I read posts where some ladies (and bless your hearts) are having constant uti's, yeast infections from antibiotics, catheter problems, and who have had more than one attempt at correcting their fistula's. They always seem to keep a positive attitude. They have been able to joke instead of cry because they are all out of tears. They are such an inspiration, but yet I don't know how to be that strong.

I am waiting for another 25 minutes for my doctors office to open. I do have a question. I have been scoping out other doctors in the off chance I am not impressed with my uro. I remember the 40 minute trip home from the nearest hospital after my was really bad. The hospital I am looking at is 4 hours away. Will I be able to withstand that trip home after surgery?

When I get more info I will be sure to let everyone know. Again, you ladies are my pillar of strength. I am terrified, but I have something to hold on to at least. I am not sure what women did before this board!
's to all!

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