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Fistula Repair Surgery Failure Fistula Repair Surgery Failure

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  #21  
Unread 03-24-2003, 08:56 PM
Fistula Repair Surgery Failure

Terry & MJ-

I was so glad to see a post from both of you! Glad you're both well and getting better every day!

Terry-good luck tomorrow with the supra-I know you will be glad to see it gone!

My nephew is a Marine-he is over there , too so please add him to your prayers...

I am doing fine, just get tired alot easier but am building my stamina back up slowly.

Take care and I'm glad everyone checks in now and then-i think about you all!

Hugs, Louise
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  #22  
Unread 03-26-2003, 06:24 AM
Fistula Repair Surgery Failure

Hi Louise,
I will pray for your nephew as well as all of our troops. I hope this all ends soon. I did not get the good news I had hoped for yesterday. Was surprised with a cystogram & it showed I am healing well in the area of the fistula repair but have popped a new hole just below it. I did not get my supra removed & am once again back on new anitbiotics. My options are to get a 3rd uro involved, either a Dr. McGuire in Michigan that once was thought to be the best uro in the country or to see a uro in Kansas City that has developed a new procedure for worst case scenarios such as mine. I am opting for KC first as I know the good work done there & the dr is younger & not so jaded. I asked about ending all this & having a bypass done of my bladder as another patient of my first uro has had. He has bladder cancer but leads a normal life. My uro said that at 45 I am too young to throw in the towel. I am waiting for a call this morning as to when my appt. will be early next week. I am keeping busy getting a care package together for my stepson in Iraq, another with Easter items & baby pictures for his wife & daughter and another box for Easter for the other grandkids. I am trying not to think about another surgery or anything until I see this next dr. and hear all the options. My husband told the dr I am not strong enough for another surgery at least not now. I guess the defining factor will be the supra. I want it out & he won't remove it as long as I am leaking this bad & have such a large fistula. Dr said this fistula wasn't there 2 weeks ago & says my problems are probably from lack of bood supply to these areas. My gyn is indicating that they need to pay more attention to my pathology report & I need more of my dead tissue removed. I will be taking my Pathology report with me. I was very depressed yesterday but am dealing with it today. I feel like the never ending story. If anyone has any ideas as to how to keep the supra site from getting so gunky & seaping 'cause it stings let me know. Dr just said wash with Peroxide several times a day. Already do that with no results.
God Bless,
Terry
  #23  
Unread 03-26-2003, 09:00 AM
Fistula Repair Surgery Failure

Terry,

I am so sorry you have to keep going through all this! I wish there was something I could do to make you feel better, but I know there isn't. You are in my thoughts and prayers.

As far as the supra sight, after every shower, I did the peroxide thing-let it air dry, and then put a little neosporin around it. It seemed to make the edges heal, and even after I got the supra out, I used neosporin and it healed pretty fast. Also, when I was home, I tried to let air get to it as much as possible-I didn't wear panties-I know that may be impossible if you're wearing big pads, but maybe when you're sitting down you could expose it to the air. Hope it helps you.

Hugs,
Louise
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  #24  
Unread 03-26-2003, 10:32 AM
Fistula Repair Surgery Failure

Thanks Louise,
I will try that. I always keep it bandaged. My appt. is next Wed. I was just reading up on my new uro on the web. I have come across his name several times since all this started. He is quite well published for only being a doctor for 12 years & they claim he has developed several new techniques not requiring invasive surgery even if you have had a failed invasive surgery before. However my last uro was just in the paper March 9th for performing a successful experimental prostate surgery never performed before so I am not sure if credentials mean anything or not. I am beginning to wonder if it is all made up or am I the exception. Wondering if I should ask for something for depression or just ride this out. Hardest part was calling my boss to let her know I wouldn't be back to work anytime soon, you know vacation time is starting. Very hard on my dh, he is tired of playing nurse maid although he hasn't complained .
God Bless,
Terry
  #25  
Unread 03-26-2003, 11:18 AM
Fistula Repair Surgery Failure

Hi ((((Terry)))) I am soooo sorry to hear you are still having even more troubles with these holes. ((((Louise)))) gives such excellent advice, I hope her suggestion about exposing the area to a little air helps. At least it sounds like it would feel better!

I have another suggestion that might be a long shot. You mentioned that the tissues in your bladder are weak and not healing. I remember somewhere in the that you have had other symptoms in the past that sounded to me like low estrogen locally as well as systemically(leave it to me to find something hormonal in everything ).

Is it possible that you're having some urethral atrophy and that it extends up into your bladder in the form of weakened tissues there too? Low estrogen levels in the tissues of the urogenital system can wreak havoc... I wonder, have any of your DRs suggested having you use some vaginal estrogen (Premarin is the quickest to work, but there are bio-identical choices as well), at least temporarily, to see if it helps you heal better? Just an that might be worth bouncing off your DRs.

Sweetie, I hope one of these DRs holds the key to fixing everything for you. I agree, you are very young to be having to consider bypassing your bladder. It's good to know that it is there as a last resort, but I've got to think there is a way to get your own bladder function back. I will be keeping my fingers and toes crossed that the answer shows itself to you soon.
Many s,
-Linda
  #26  
Unread 03-26-2003, 02:43 PM
Fistula Repair Surgery Failure

Hi Linda,
Thanks for the advice. I will have to wait until next Wed. but my dh & I have a lot of questions for the dr. As far as my gyn he has me on .075 Climara patch which seems to control my emotions if nothing else. He doesn't want go any stronger because I had endo & adeno which they claim can aggravate endo. Also my sisters have had endo grow back. I plan to take a copy of my path test with me. He has talked about a more aggressive path when I am healed. Says right now it could prevent me from healing properly. My previous 2 uro's have told me to stop looking for trouble & scoff at any questions I have had. Probably 'cause they didn't know the answer. We think this new fistula popped out day after last surgery 'cause that is when I started leaking. Of course uro at that time told me it was impossible for me to leak because he did a great surgery. My uro has not had the same attention for me as he did after 1st surgery. He has acted discouraged but didn't have the heart to tell me. My patch came off last night & I can sure tell the difference in the way I feel also I am sore from all the tests. My husband has a freind w/a very aggressive bladder cancer & a couple of years ago we didn't think he would make it. Now he is back to a normal life & doing fine. Just got back from shopping. Discovered that my husband's PJ's work great when you have a cath in as long as taped well, so I bought some for myself. Kept thinking all this was temp so didn't look for long term solutions until now. Have a terrific back ache so will go lie down. My dh went to break the news to his mom in person. I get better informed with each surgery as does my husband. If I have anymore he might be able to do it right here at home. Ha!
Terry
  #27  
Unread 03-28-2003, 06:36 AM
Fistula Repair Surgery Failure

Hey Terry,

So very sorry to hear that you have this continuing. I will keep on praying for you.

I used the vaginal estrogen cream (Premarin) during my fistula time because of the advice of the fistula sisters that went before me. I think they had read about it as standard procedure on emedicine.com. My gyn was glad to do any thing that could possibly improve the tissues in that area. I think I used 1/2 an applicator full twice a week.

Hydrogen peroxide is great as an initial cleaner but it can be really hard on tissue. You might ask the doc (or the nurses) if you can use good old Dial soap or something more gentle. You don't need the added aggravation of skin breakdown in the area since that would again lead to the possibility of infection.

Take Care,

MaryJulia
  #28  
Unread 03-28-2003, 07:03 AM
Fistula Repair Surgery Failure

Thanks for the advice. I will ask about Premarin cream but I think that is one I am allergic to. My Gyn is involved in some of the new HRT programs & attends a monthly clinic to keep up but is afraid to introduce anything new to me at this time. Hopefully the new Uro will prescribe something to help. I have high hopes as his successful newsworthy surgeries are an endless list on the net. Right now the neosporin is helping quite a bit. I am having outrageous bladder spasms later in the evening & have doubled my darvocets. I am wondering if I am drinking too much water 'cause I notice it getting worse the more water I drink. It could also be because of new meds or stress. I am trying to get everything done around the house just in case I end up back in surgery. One day at a time. I also notice my dh doing more of the little odd jobs around the house like he also is tying up loose ends. Probably to keep his mind off everything. Anyway I am just greatful to get it all done.
God Bless,
Terry
  #29  
Unread 03-28-2003, 07:21 AM
Thinking of you!!

Hi Terry

Hope you feel better soon and just want to say hang in there and I am thinking of you!! Try not to do to much as this might aggravate all your muscles and make you tense up more. That is what happens to me and then by 5pm I am ready for bed..things will get better and your new Dr sounds terrific!! Sending a warm Take care and have a good weekend..

  #30  
Unread 04-03-2003, 08:03 PM
Fistula Repair Surgery Failure

Hey Terry,

Did you have your appointment? What did you find out? Just wondering if you have a plan is and how you are doing.

As Always,

MaryJulia
hysterfistulasister
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