2nd fistula repair, started leaking again; update 3rd repair-No leaking!

Hello,

I used to post on this site regularly but I stopped due to depression. I have been praying hard for some type of answers and directions as to why I am going through all of this and I decided to try and open myself up and maybe sharing my story will help someone else. Or better yet maybe I can get some support or encouragement from others who have gone through or going through what I am now. I promise to make this as short as possible. I did have a thread started back in July of 2011, but I can't find it.LOL and a lot has happened since then.

I had my second vaginal fistula repair surgery done on May 3, 2012, I came home with two caths, one foley and one supra pubic cath. I am dealing with two different dr.'s (one urologist and one gynecologist). After a couple of weeks I developed an awful infection around the supra pubic site. I went to gyno and he cleaned out the site and also completed a vaginal exam and discovered that the repair site was infected too. They switched antibiotics and redressed the supra pubic dressing. After a week I noticed a huge difference with the infection, but pain eased up and the site stated looking normal, but then I started having issue with the foley cath. I called my urologist and told him how uncomfortable I was feeling and by this time it was almost 5 weeks after the surgery. I went to the urologist and they took out the foley cath, it was leaking saline from the balloon and my bladder was trying to push it out. OUCH! So it was a blessing to only have the one cath, the supra pubic site infection was doing so much better. I am going into week 6 now after surgery and I decided to try and get out of the house and go to Church. I hide my supra pubic cath carefully and slouched through the service but it was wonderful to be back and try to get back to somewhat of a normal life. Well last night i started feeling a little leakage, I thought it was discharge (sorry for TMI) , but I also notice that it was actually to thin to be discharge and discovered it was urine leaking from the vagina. I went to bed with a Poise pad on and woke up with my cath bag half full and the Poise pad full of urine. I called my gyno (I have a closer relationship with him) and I thought he was going to start crying with me. Wednesday I have a die/tampon test scheduled for my bladder for detect any type of leakage. I am going to my gyno tomorrow morning so he can do a vaginal exam, which he will be able to see if there is leakage.

I am praying so hard that I am wrong and maybe the urine is coming from my urethera. I was so convinced that this second repair surgery was going to be my last and they had gotten it. I am very scared and anxious that this is another fistula leak. I am writing because I need HELP from anyone!! I feel alone and I need to know if anyone else has had to have multiple fistula surgeries and how they have maintained their sanity doing this nightmare. I don't know if I am going to be able to keep it together, I feel like I'm barely hanging on by a thread and I don't know if I can go through all of this over again. I have three young boys, my oldest is 9 and my youngest is 5. This has affected everyone and they are suffering with me. Not to mention my wonderful husband, who has been at my side through out all of this, and of course my Mom who is playing Momma, Nanna, cook, housekeeper...... I need encouragement and support and to know that I am not alone!!!!! Thank you for listening!
My real name is Chrsty

now you are scaring me! i had TAH dec,5, 2011, started leaking night before i left hospital, told all nurses, didn't get a chance to tell surgeon (he flew out room before i got chance) but i did tell his nurse and him several times before the six week check up, the next day after release, the 2 week, visit. even told my regular doc, he took urine sample, he thought it was bladder infection, guess surgeon did too, until 6 week visit when he checked down there. All he did was scream at me, that i lifted something and i split my stitches out of top of my vagina, he stuck blue dye up me, said i did NOT have hole in bladder, he sent me home with foley cath. i did ask how urine was getting into vagina, he claimed that since the bladder and vagina are against each other , they can transfer! did not understand that! end of april , he stuck the blue dye in and claimed the hole was still there! claimed my cigarette smoking caused it! i immediatley went to my regular gyn, whom said he should have refered me to an urologist and refered me to one, i have a vesiovaginal fistula, does NOT heal on its' own! surgery is june 18th to fix it.now i have another problem, last week, i started itching and burning, he gave me the pills for yeast infection(don't know the name of pill) and cipro (antibiotic) the itching is gone but the severe burning hasn't. i called the nurse this morning, of course i got voice mail, i am hoping this new cath is just rubbing me, can't see how i could have an infection, i have only been off antibiotics for a total of 3 weeks since surgery. waiting to hear from her now. i am scared they might have to pospone surgery. i have been cathed since jan, 18, 2012! now i really scared.

Hi mouse1261,

I am so sorry to have frightened you. I am truly sorry! No two surgeries are the same because my first repair was going wonderfully until the tech who did the cystogram overextended my bladder with fluid and blew out the repair sutures. And of course that created another fistula. From what I understand and what I've gone through we have to stay on these doctors and make sure they actually hear our symptoms and problems, otherwise sometimes we get pushed aside. There are several tests that can be done to detect fistulas, cystogram, cystoscopy and this die/tampon test (not sure of medical term). I so understand your frustration and anxiousness. I am so done with all of this myself. I went today to see my gyno and he did a vaginal exam and he didn't see any urine coming from the vaginal repair site, but as I left his office and went out for lunch, with of course my leg bag. I go to the restroom and empty it and i feel urine coming out of my vagina. I was prepared and have always worn Poise pads because of everything that i've gone through, but I know tomorrows test will definitely give me the answers I need to know. I know what its like to live with a cath, whether its a foley or supra pubic. This has been a life changing experience and i've come to the realization that I may not be done with this journey.
I'm sure they will do a preop before your scheduled surgery, which they will detect if you have an infection and in my past when thats happened to me, they prescribe me antibiotics and still schedule my surgery. Don't give up and don't let up on the doctors, unfortunately you have to stay on top of them. You have to become your own advocate. It's been difficult for me, but that's the only way I get anything done, I have to become a squeaky wheel!
Are they repairing your fistula vaginally? or are they doing it abdominally?

my surgery will be abdominal, my fistula is pinpoint size, he seems confident that i will only need foley a week after, maybe 2 i just hope this burning is just the cath rubbing me, and not an infection that will cause a delay in surgery.from what i've heard this docter is really good! so right now he is my knight in shining armor!
let me know how your test comes out, good luck!

hey mouse1261,

I have great news to report for a change, I passed my die/tampon test this afternoon. I also gotten my supra pubic cath taken out, so right now I am tube FREE!!!!! Yeah, thank you Lord!!!!!

So, now I can finally say, I made it through this chapter of my life and I feel like i can start moving forward and I'm not in this standing still motion. This has been going on for almost at a year now and I haven't felt so happy and joyful in such a long time. When I came out of the surgery room, I was crying and couldn't stop crying. But it was happy tears of course. So I hope i can now send words of encouragement and support to other women who may go through this or maybe going through this. There is an end to it even when you feel like you just can't keep going. Sometimes you take two steps forward and then you turn around and its three steps backwards!!LOL
But I am still going through retraining my bladder and my poor urethra, because i haven't used it in almost a year and what shock it is!!! I am leaking from urethra because i have no sensation of peeing, if that makes sense, I feel just a fullness and pressure of the bladder and then i can feel like a dribble sensation and then go and sit and empty my bladder. It is painful and a lot of pressure, but I was assured that this was completely normal, due to having so many caths in for almost a year. I am still on cipro for preventative and I'm still taking pain meds, I can't take ibuprofen ( it has done damage to my stomach). The bladder spasms feel like contractions and the urologist removing the supra pubic was extremely painful, I screamed out loud in the surgery room, which startled him and he ended up stop pulling it out and the jerked it out and I screamed again. He gave me no warning what he was about to do to prepare myself (I have major issue this urologist, his bedside manner is awful)!! That was the worst/painfull part of my day, but I'm very sore and swollen and having spasms but my spirits are up because I honestly feel like this repair is the last. Yeah!!

Now your abdominal surgery will probably be very successful, both of my were done vaginally and I think abdominally is the way to go because they have more room to work with. Now my very first surgery was a vaginal hysterectomy but my bladder was lacerated during the procedure and that is what has caused all of my issues and i know the recovery time for abdominal is a little longer, but you just take it easy and let everything heal and don't try to rush anything, because it will do more damage and could cause another fistula if it doesn't heal correctly. I will be thinking of you on June 18th and I will be sending you encouraging and supportive thoughts. I know the first week or two are very difficult, but if you can please post to let me know how everything went. I also do think the irritation you are feeling with the foley is friction too, and sometimes the saline leaks out of the balloon and your bladder tries to expel it out, it's a foreign object its not supposed to be in there.LOL

I will also keep posting on any changes that I may be going through, but I truly believe that this is the one that finally worked.

Good Luck and God bless you!
Christy

I have read your thread and I am so happy for you Christy!!! I know the feeling of being tube free!! I too cried like a big baby. I had a Fistula from my Ureter being cut and had to have open surgery for the repair. IT is a happy day when all tubes are gone. CONGRATULATIONS!!! Hang in there mouse1261 I am praying for a smooth recovery from here on!!

that is great, moonbeam3! i dream of the day i'm cath free!
have you heard of kegal (sp?) exercises? my friend, a retired LPN said it will help the control. omg, did he take the suprapubic cath out without anesthesia? LOL i would have knocked him silly! i am so glad you are cath free, hope you remain that way! i go see my doc tomorrow, hoping this burning IS just friction, and not something he has to pospone surgery for i have made it this far!
will let you now what he says.

i have great news! i saw my doc yesterday. he explained in detail what he is going to do, the incision will be from belly button down, first he will cut the scare tissue away from bladder and vagina, then find some healthy tissue, and sew up bladder and vagina with that separately, that way he says i will never have to worry about another one developing, and he says i will not have any problems when the cath comes out!

Wow mouse1261, that is good news. I will be praying all goes good for you tomorrow, please let us know as soon as you feel like posting how things went. I pray that this will be the end to your journey. My thoughts and prayers will be with you. Good Luck sister!!!!
Christy

Well I have been having some issues develop since Friday, I haven been leaking but I thought it was because I've had the cath in for so long that I would have to retrain my bladder. Well Friday, I was on my feet a lot and had a lot of running around to do and I had noticed I was going through ALOT of Poise pads and really not urinating that day. I had sat down on the toilet to go but I couldn't but of course I had a full Poise pad on too! I am getting extremely concerned that something is wrong. Saturday night I kept worrying about it and decided to do a little test myself to see if I was actually leaking out of my vagina, and not urethra. I inserted a super tampon and kept it in for not even 5 minutes and took it out and if was full of urine. I was so upset and my heart was racing and I couldn't sleep at all. I did a lot of praying and finally just asked the Lord to take this burden and just give me some peace for this night and let me sleep. And of course, I did and didn't wake until I had my little guy was crawling in bed with me. Now I did get up twice during that night and pee and had the pressure of a full bladder and while i was peeing our of urethra it was painful and had to push it out but I went right back to sleep. I am scared to death of what is going on with my body and I don't understand anything at all of what it happening. I am praying that MAYBE this leak is just coming from where the supra pubic was and when he removed it on Wednesday, without anesthesia (jerk) by pulling it out so hard the whole got bigger and it is leaking from there, which is at the top of the bladder.

I don't know and my heart feels broken, I came home from Church where everyone was so loving and happy for me and just thrilled to have our prayers answered and I am thinking to myself I don't know if this worked or not, I feel like I've let people down, I know that sounds strange, but I feel like i've gotten peoples hopes up and maybe I may need a 3rd repair. I am overwhelmed and so confused and literally heartbroken! I am so scared again to find the truth out, even though thats what I know I have to do to move on. My story gets so much deeper than what I've written. I have had to have a lot of help this last year from my family and I'm feeling resentment for having been a burden, which is something I can't get into now. But this also plays into my fears of finding out the truth of what is actually happening.

My gyno texted me this morning before Church and asked how I was doing? Which I thought was a little strange, but he has been very concerned with my case but he is the actual doctor who lacerated my bladder too, so he plays a big role in this too. So I'm not sure if there is more than what they are telling me. I did another tampon test this afternoon and as soon as I inserted the plastic tube and pulled it out their was urine on the tube itself. i kept the tampon in for about 10 minutes and took it out and of course it was full of urine.

I apologize for this being so long, but I feel disappointed and upset. I told my wonderful husband on "Fathers Day", timing sucks!! But I told him to just give me a few minutes and I went into the bathroom and shut the door and bawled into a towel, so my children wouldn't hear me.. I really felt like I had lost a loved one, like something died in me and my heart was breaking and hurting. I cried for about 15-20 minutes and my husband came in and just sat on the floor to be with me, he didn't know what to say but he loved me and he always will and we will get through this again. My next appt. is on the 26th and I am going to give myself some time to emotionally catch up because I'm drained and frightened!!

Thank you for anyone who is reading this and just letting me vent and being there for me. I know I will make it through this, but I've got to regroup and get my head straight before i come up with a new plan.

Christy/Moonbeam3